DA's MS mumblings

Wondering what to do...

2012-01-30T17:23:00.000-05:00

I have to make a trip by plane to Ottawa. Here's the problem...do I take my cane, which is some help to me but which isn't a LOT of help to me, if you know what I mean - or do I take my bulky rollator, all shiny black four wheels of it? I can walk SO much better with it, but I probably won't be walking much and it's so bulky. On the other hand, in addition to MS I am having knee problems and there is a significant difference in pain if I use the rollator to walk.
Hmm. How much of a crip do I want to be?
I am lusting after a little collapsible 3 wheeled rollator but it's $100 I don't have at present. So....
Any advice, MSers?

MS as a lipid disease? Interesting concept...

2012-01-28T17:14:00.000-05:00

from i09.com

Have we been looking at Multiple Sclerosis all wrong?

Multiple sclerosis is a confusing disease. Widely regarded as an autoimmune problem, it affects millions of sufferers, and we still don't have a complete grasp of what causes it. Part of this problem is due to the fact that every time we find something that seems to be a factor in how it works, that factor doesn't seem universal.

But now there's a new theory of MS that could lead to a radically different treatment for the disease.

Top image: Random 42 Medical Animation.

A new meta-analysis by Dr. Angélique Corthals proposes that much of the difficulty we have with understanding the causes of MS may be because we're wrong about its basic mechanism. In a publication in The Quarterly Review of Biology, she proposes that rather than an autoimmune disease like previously supposed, MS might in fact be a metabolic one with an immune component.

It's a bold assertion to be sure, and one without original data to back it up (at this point, anyway). With MS, the myelin which protects and insulated the nerve tissue on your brain and spinal cord swells, and then scars, leading to neuronal damage. Corthals' theory gives another framework to approach this damage, and one with links to a disease we do understand — atherosclerosis.

This is where things get a bit dense, so bear with me.

There are certain environmental and genetic factors which can impair PPARs (peroxisome proliferator-activated receptors), which is part of the system that controls the metabolism of fat as well as immune response. When it's running at partial power, the PPARs can't properly control the levels of LDL — the infamous bad cholesterol — which leads to a build up of an oxidized toxic derivative of LDL called oxLDL in the blood. Once these are in the system, Corthals believes the body is "primed" for MS, and it can be triggered by a number of causes, including Epstein-Barr Virus, which is linked to MS in its own right.

Once triggered, an immune system chain reaction starts. The body sends out macrophages to deal with a pathogen, but the macrophages incorrectly gorge themselves on oxLDL. This puts them in a "zombie state", where they don't die and can't empty their contents, instead just building up plaques which damage the myelin sheath, and cause the symptoms of MS.

Edited to clarify: At this point, the disease triggers the immune problems we know of as MS. The theory isn't discarding the immunological side of the disease, just citing metabolism as a root trigger, which leads to the problems of the immune response.

Said Corthals:

Eventually, the toxic macrophages are cleared, leading to the remission part of the RRMS (relapsing-remitting MS) cycle. But this detente holds only until the next trigger comes along. Dysfunction of the PPAR is further implicated in MS because it slows the repair mechanism of the central nervous system to a crawl, preventing the efficient renewal and synthesis of myelin.

It's a novel theory, and while Corthals is working on pulling together some empirical data to back it up, it does answer some of the issues with how MS manifests. The disease has been linked previously to low levels of vitamin D, and is on the uptick in recent decades. Low vitamin D and a diet high in both saturated fat and carbohydrates (which is likewise on the rise) both contribute to the impairment of PPARs.

The mechanism that Corthals suggests is also interesting because it's incredibly similar to that of atherosclerosis. Atherosclerosis is when PPAR failure causes plaque buildup and scarring in arteries, which is the equivalent to what's being described happening to myelin. Also interestingly, men are far more likely to have atherosclerosis and women to have MS, which Corthals suggests may be because of the different way sexes metabolize fats. In the paper, she recommends "multiple sclerosis should be thought of as a metabolic disease, the female equivalent of atherosclerosis, not as a disease of the immune system."

If the raw data bears out this theory, it would mean a radically different approach to the treatment of a major chronic disease. One based on lipid metabolism (and potentially diet) rather than targeting the immune system directly. If it holds up, it would be a major paradigm shift in the way MS is handled — but first we need to see if the data fits the theory.

For further reading, Corthals has been weighing in on this discussion, and if we're lucky, she may even pop up here.

Contact Tim Barribeau:

Interesting discussion on this blog as well...plus a link to the research article.
http://asknicola.blogspot.com/2011/12/huge-news-multiple-sclerosis-is.html

The daily-ness of it all... walking, walking , walking

2012-01-25T09:25:00.000-05:00

I linger in bed as long as I can, after a night spent tossing and turning, where I turn on my radio without knowing it and then wake myself when the volume level changes suddenly. I spin and toss as my legs ache. Finally I know I have to get up because I have a dog whose bladder is no doubt at the point of rupture in the next room. I stagger into the shower and/or pull on clothing, release the hound, and it's time for the morning ramble. It starts off easily enough, particularly if I remember to bring my cane, though handling leash, exuberant and desperate puppy, keys and poop sacs is an interesting dexterity challenge. Today I can see properly, so it's a bit easier. Last night the fog was internal and external. Weather and vision. That terrifies me and I spend a fair bit of my time praying loudly that the gods preserve my sight.
But about, say, 300 yards into the walk, it is no longer pleasant. Legs and hips remind me of the MS. They start, ever so annoyingly, to add pain to the walk. Like sands through the hourglass (as the soap "Days of our Lives" used to say), each step adds a soupçon of misery. By the time we're on our way back, the dog is dragging me, looking back to see what the problem is. My legs feel like they weigh 2000 tons, like the weights in Wily Coyote's plots.
I suppose it would be easier if I used my walker, but I'm fighting that. It's even bulkier than the cane and I'm not sure how I'd hold the leash. I suspect bungee cords would be involved.
But we get home and I stagger about feeding the beasts until I can slump myself into a chair.
Which, about half an hour later, is uncomfortable. So I stand to pain.
There's got to be a way out of this cycle. Other than scotch, which does help but which isn't recommended for breakfast, for some reason...

Fog Horn

2012-01-13T16:10:00.000-05:00

I am lucky enough to live near the sea - right near Halifax Harbour. It's fabulous. There are two sounds that make me smile every time I hear them - the noon-day gun, and the foghorns.
I wish I had one of those. I'd like to be able to blatt it out whenever I go to do something without thinking. Which is a lot of the time these days as my MS-brain gets more muddled.
Like when I signed up with my local newspaper (a shameless rag). I didn't realize I had agreed to subscribe in perpetuity. So when I changed my credit card and they sent me a note saying that my credit card had been declined and if I wanted the newspaper I should call them right away, and I didn't call, I ASSUMED that meant they'd discontinue my paper. Not here in nice NS. They ran it on for another month. Then charged me. Now I don't feel like I should pay for the newspapers I didn't ask for, but who really knows what went on? I surely can't remember.
Or when I go to buy something and buy it without realizing I have no money to pay for it.
Or when I send in a writing entry filled with errors and spelling and grammar mistakes cos I just don't see them.
That's when I want to pull the chain and blatt out a big foghorn warning for everyone who has to deal with me - but for me, too. For now, I'll just have to hope it stays foggy around here and pretend the ones I hear are meant for me...

Not the hands, please god, not the hands!

2012-01-10T11:01:00.000-05:00

I've dropped my keys about 20 times in the last few days. I can't open milk containers anymore without the use of a knife. Bits of paper have to be attached to me with pins or they flutter to the ground.
My hands are losing their grip.
How damn annoying.
I just started loving knitting. I have oodles of yarn to make into things. Yet my hands can't handle it anymore.
I can't read big books (I like big books and I cannot lie). Having to read on an ereader, which is okay except it dies regularly. Grr.
On the good side, I've started needle felting. And since my fingers are numb, I can stab myself with gay abandon. As long as I'm felting red things. To soak up the blood.
But I type my thoughts. What if I totally lose that? Yeah, I can use that dictation software but it's hard and bothersome and just not as much fun as it should be because you have to speak punctuation. Period. Which is annoying. Period. Or is that exclamation point? Question mark
You see how it could be frustrating comma especially since I don't often think of punctuation and just let it happen period Which accounts for a lot of my editing problems comma perhaps period.
New paragraph.
Arggh. And then there are the mystical misspellings. When I get on a good dictatory run, I don't watch the words form on the page (partially because it is a bit slow and it's a bit like listening to a recording of you speaking just a bit slower than you do). I go back to reread and find the punctuation parts and realize a completely different story has been written.
It's not that it is necessarily a BAD story, but it isn't the one I was writing. I feel like I am in a partnership with HAL. (I wouldn't erase that if I were you, DA)
I need my hands. Take my legs. I've already seen them going. Bits of them are dropping off - the toes went first, numb and no longer available for location. My hips are on temporary strike and need to be promised increasing wages to cooperate. My knees just laugh at me. Shaving my legs invariably results in loss of blood. They need support, preferably 4 points of it.
But my hands - I like them. They are squarish, man-hands, designed for work. And I want them to work. Please?

TEVA

2012-01-05T16:48:00.000-05:00

Teva CEO

I hate having to take Copaxone. It's not so much the shots that get to me, or the fact that it doesn't seem to be doing anything to slow this disease - it's because TEVA pharmaceuticals is one of those bad bad drug companies who overcharge for their meds and do so obscenely and even after being reprimanded and charged a fine - and now they are dancing in the streets because a rival company is raising the price on another MS drug and so they can probably increase their charge for Copaxone.
It's this sort of practice that makes me see red. Why do companies have to become obscenely rich on the illness of others?
Of course, I should check my mutual fund portfolio. Perhaps I have some stock in Teva. In which case, I've been supporting their greed and gluttony.
"Curses," as Snidely Whiplash would say, "Foiled again!"

Word Salad, Or gazing through a diver's mask...

2012-01-05T16:37:00.000-05:00

The other night I headed out for dinner with some friends despite my feeling of overwhelming fatigue after the holiday. I was glad I had a sweetie to drive me because for most of the evening I felt as if I was wearing a diver's mask - one of those ones where you can just see out a tiny glass screen, while the rest of your head is surrounded with copper. I couldn't understand my voice level - I was sure I was shouting and kept trying to bring my voice down. I have no memory about our conversation; I barely remember what we ate except that it was delicious and so is stuck in my sensory memory. All the time I spoke I felt like I'd been heavily into the wine - my mouth needed thought to form words and they seemed to come out mushy and drunken. Muscles for speech were sluggish and sullen.
We staggered home - me tacking heavily to the right and left (again, thank heavens I wasn't driving) and I fell into bed to sleep for 12 hours straight.
It's probably the worst I've been cognitively for some time, and reminded me of how I felt after a couple of days at work. It amazes me I was even able to show up. Small wonder I seemed like an idiot to others, or a grump, or a bitch. Who knew what my voice was doing? Or my mouth? I certainly didn't. I feel like I should apologize to everyone.

Multiple sclerosis linked to different area of brain

2011-12-24T08:22:00.000-05:00

Multiple sclerosis linked to different area of brain

Oh goodie, goodie. Apparently my thalamus is shrinking. Like a 70 year old's. I am upset. I've always liked my thalamus, rounded and plump as it oughta be. Now I am envisioning it on a Lindsey Lohan reducing diet, complete with drug enhancements and untold and weird cellular attacks.

While I am enchanted by the thought that people are still interested enough in MS to research it using very expensive equipment, none of the research seems to be leading to effective treatments. Just more bad news.

Well, I'm lying. There are some exciting new developments hovering on the horizon. Things like remyelinating drugs, treatments that slow the disease and don't merely mask its effects, good stuff like that.

But they are slow in developing, and meanwhile, my thalamus is shrinking...

On the other hand, I now have a perfect medical explanation for why I am going crazy!

Research Roundup: CCSVI, New Drugs, and Other Items of MS Interest | Wheelchair Kamikaze

2011-12-12T21:24:00.000-05:00

Research Roundup: CCSVI, New Drugs, and Other Items of MS Interest | Wheelchair Kamikaze

medication tango

2011-11-17T10:35:00.000-05:00

Being a "patient with MS" means being a patient on a cocktail of drugs, most of the time. They pitch and yaw you, spinning you between spasm and lethargy, dizziness and balance, drowsiness and energy. It's like walking a balance board with wobbly bits. There's temptation on that balance board, too. But you always pay.
Today, for example, I am totally stoned. Last night I took my usual medication to stop my legs kicking violently - it's a benzodiazapine and I've stayed on the same dose for a long time, for which I am proud, as these drugs are addictive, habit-forming, and require, usually, a regular upping for effect. I might, in fact, need to up mine as I wake so often at night, but I'm fighting that fiercely.
And last night I took a full pill for my leg spasms - baclofen - the mystical drug that has put so many people into wheelchairs. See, the same controls that make your legs spasm painfully are also the ones that make them able to hold you up. Usually I take a half pill. I didn't last night, wanting to try to sleep an entire night for a change.
So today I can barely see outta my eyeballs. I am too tired to drink my coffee. Taking the dog for his morning walk was like a trip in my head - I have little remembrance of the event, not of the temperature of the day or the smells of the air or anything. I finished my shower without noticing the plug was in the tub so the water was up over my ankles. Fair enough, I can't feel my feet anyway, but I should have noticed the sloshing...
So, I'll have to adjust down again and deal with the hours of nightmares I have every night, probably caused by my waking in the midst of them. And be tired because of that. And have painful bum spasms when I walk. Tra la tra la!
Added to that, I've been taking big doses of Vitamin D, 4000 iu a day, and now I find out it seems to be tied to heart disease. So will have to adjust that as well.
Of course, my copaxone dose remains the same. Always. No matter what I weigh or how ill I am. This baffles me, and makes me doubt it's efficacy, especially since I don't seem to be holding steady in my disease.
But maybe it's all just drug reactions? Or interactions? Or something?
I hate having to learn new dance steps all the time.

does being numb make my soul numb?

2011-11-03T19:22:00.000-04:00

Being numb now for over a year, I often wonder what other effects it has on me. I'm not totally numb - as I've noted, sometimes I have pieces of sensation. The numbness is becoming more profound, though - affecting my balance, my ability to write and type and chop bagels without injury, blocking inner sensations from bladder and bowel and other more interesting places. (Dang it!)
Neurologists invariably say they are less concerned with numbness as a symptom than the other things like muscle weakness and such. It's not supposed to be so serious. And yet, it changes our lives.
For those of us so enclosed, it's pretty disabling. It disconnects me from the world, makes it seem like I'm watching outside me through a pane of glass - and with my blurring vision, that isn't so great. And it has this other effect, too, of making me feel distant from people, from the world, like I'm shut in a padded room where even the room temperature doesn't make me feel.
Philosophically, it makes it difficult to care. Because I feel distant, I have to constantly make an effort to reach out through the fluff to touch others. It's easier to remain inside, where I don't have to make the effort.
Maybe the exterior numbness is contributing to depression. I know I've battled depression for years now, and wading around there in the darkness does make things seem muted, edges less sharp, needs less urgent. I find as I get more depressed or more numb, I go for exotic tastes, different experiences, more carbs.
I probably just need to exercise more, to thrash my wooly body through space so that I can get a feeling for where my limbs are. Usually that helps The deep breathing helps, too. The exercise makes me more numb, but somehow makes that all right after all.
But oh, it would be nice to feel certain things again: the fur of my puppy, the touch of my friend's hand, the roughness of sand, the smoothness of rocks, the barrel of a pen when I pick it up to write.
And let's not spend too much time on this, but it would be smashingly lovely to feel making love again. Or a bit more, anyway.
Maybe I need those steroids. Might help my sex drive, too. Of course, would grow more hair to be fried off by my friendly local electrologist, but it could be worth it...I hear ZZTop are still doing pretty well at their advanced ages...

Here are a couple of things from the National MS Society (which as usual, is the name of the US branch - why they think the rest of the world isn't a nation, I dunno) on numbness. Reality is, if you've got it, you're screwed. Not that you'll notice...

There are no medications to relieve numbness. Fortunately, however, most instances of numbness are not disabling, and tend to remit on their own. In very severe cases, a neurologist may prescribe a brief course of corticosteroids, which often can temporarily restore sensation. National MS Society

http://youtu.be/jjcD7a3SB9o

No wonder I feel dizzy

2011-10-16T09:12:00.000-04:00

It makes sense that MS would affect the autonomic nervous system, something we don't talk much about since we usually deal with the muscle problems and cognitive problems and all that other messy stuff. But apparently, according to this study, we may be losing venous pressure while sitting.
Which a lot of us do a lot of.
PS: I think it's hilarious one of the researchers is named Venturi.
I still remember reading the deadly serious warnings on our BBQ about SPIDERS IN THE VENTURI TUBES. Of course when we looked at our BBQ after the long winter, mice had nested in it, and their woven bed made out of our lawn chairs had indeed prevented any spiders from seeking a home. But that's another topic.
Note, CCSVIers, this has nothing to do with blockages, so please don't fill my blog with "Aha! Proof!" rants. It's tiresome. And this is a preliminary study...needs repetition. Still, very interesting. I think we should be aware of the autonomic effects of MS as it may help explain the weakness that we feel and perhaps some of the vertigo.

http://www.msif.org/en/research/ms_research_news/quantitative_col.html

Quantitative Colour Doppler Sonography Evaluation of Cerebral Venous Outflow: A Comparative Study between Patients with Multiple Sclerosis and Controls

summary: This interesting paper published by a group from Italy reports data from 27 healthy adults and 52 patients with MS. The difference between cerebral venous outflow (CVF) when lying down and CVF in the seated position which they refer to as ΔCVF was found to be negative in 59.6% of patients with MS and positive in 96.3% of healthy subjects. Statistical analysis showed that negative ΔCVF values were significantly associated with MS (p<0.0001). However there was no significant correlation with clinical variables.

The authors comment that negative ΔCVF has a hemodynamic significance, since it reflects an increased venous return in the seated position, and suggest that in MS it may be a result of vascular dysregulation from involvement of the autonomous nervous system.

authors: Monti L, Menci E, Ulivelli M, Cerase A, Bartalini S, Piu P, Marotti N, Leonini S, Galluzzi P, Romano DG, Casasco AE, Venturi C.

source: PLoS One. 2011;6(9):e25012. Epub 2011 Sep 22.

weblink: click here

category: Imaging

related research news: click here

glossary:

    Cerebral
    Multiple sclerosis
    Nervous system
    Sclerosis
    Sign

Walkies?

2011-09-17T11:39:00.000-04:00

A couple of weeks ago I was at the point of grabbing people walking down the street and shaking them by the shoulders and yelling in their faces, "Are you APPRECIATING THIS??? Are you enjoying that feeling of swinging along, not a care in the world, your legs just doing their job without question?"

It was kindof like during my marriage when I'd gone so long without a kiss I used to fantasize about grabbing strange men off the street and begging them to kiss me so I could remember what it felt like. Fantasize, mind.

You see, I was staring at my new rollator straight in the wheels and trying to imagine my life with the bulky but helpful thing and not succeeding. My muscles were twitchy and spasmy and my balance was shot and frankly I was more blue than the brilliant fall sky.
But bless this disease - for the last few days I've been able to walk - without pain, with my legs actually seemingly enjoying the travel.

It's been FABULOUS.

Have I mentioned it's been FABULOUS???

Of course, there are tradeoffs - I still do numbness, the PhD course, but I can move.
Well, sortof. Today, taking romping chutney out for his longer walk, I noticed a nasty twinge or two in my buttock. And the legs were somewhat less enthusiastic than they were yesterday, when I walked a lot and unloaded a truck and stood for several hours. Who could blame me - It was FABULOUS!

It doesn't matter if I slow down again now. At least I know I can still revert to my happy go walky ways. With any luck.
So, Mr. rollator, off to the cupboard with you! I know you're there if I need you, but for today I'm doing the solo thing.

Fabulous!

Raindrops keep falling on my head....

2011-08-25T12:06:00.000-04:00

Sometimes this MS thing is simply magical. It's trippy. It keeps me guessing.
I know I'm going through a flare up - hey, it's been the story of my past months - legs not working right, balance off, the usual. Had a mammogram and didn't feel a thing (blessings!).
And the other night, I took the dog out for a walk late in the evening. I didn't realize it was raining, so I went out in shorts and shirt and no raincoat. Chutney went off to do his thing and I realized I was getting wet - but not feeling it - my skin was gradually feeling colder, and about every few seconds I'd feel a cold prickling on one spot or another on my arm or leg, but overall, I couldn't feel the rain at all. I felt like I was enclosed in a bubble, safe from the rain, though my hair was starting to drip a bit and my glasses were freckled.
So magical!
Of course, there are unhappier things to total numbness, but sometimes, sometimes, the beauty of the strangeness of this disease overcomes me. I hope the feeling will come back one day, but while it's gone, it's kind of cool.
Time for that tattoo I keep talking about.

Swing low, sweet chariot...

2011-08-18T19:18:00.000-04:00

Whew. These mood swings do lay a girl low. I'm already hepped up on antidepressants and yet I sink, lower than a frog's belly. Nothing tastes of anything to me. Music bores me. Sex is uninteresting (well, I'm numb, so, what do I expect?). Even the thought of a hot bath is too much.
I find myself oversensitive, tired of speaking to people, yet hungry for company and distraction. My body aches. I want chocolate but can't taste it. I want wine, but it has no flavour.
It would all make me quite desperate except that I know it's just another sneak attack from the MS - I've been having more difficulty with my balance and my walking, so I know something sinister is afoot, and I expect the darkness in my soul is just a part of that.
I'm hoping to avoid the incontinence thing - it's a rare problem but when it occurs I am desperate beyond measure. I live in dread of wandering about, smelling vaguely of pee, yet I know when and if it does happen, I'll just have to dig deep and keep going on. Like those books that are proliferating everywhere that say "Keep calm and carry on". Or "Eat cupcakes and carry on", which I prefer. I might be able to taste a cupcake.
I know a woman who has terminal cancer. She's not in pain yet, she knows she is going to die soon. She is the most cheerful person I know - handles it all with aplomb, is kind and sweet to all, is the sort of woman who says I love you to her spouse 10 times in one phone conversation. I'm trying to learn from her, as I pray for her. I wish I had her jollies.
Ah, I'm probably just pooped from entertaining folks. And other, grimmer events. I'm sure it will pass, because I just heard a seagull scree outside my window and I had to step out into the cool night and feel the breeze on my skin. I can feel little cheery sunshine lines springing up from my heart. they're faint, as yet, and if I let myself think over the events of today, I'll squash them out. So instead, a cup of tea, some mindless entertainment, and early to bed - and the hope for a sunshinier tomorrow. It's about time for this roller coaster to head up again.

Cheeriness, or how not to constantly spit

2011-08-07T15:03:00.000-04:00

Today I arrived at church with my dress on inside out. I knew it was a bad day, that I wasn't fully functional, but that's the first time that had happened.
Totally shrinkingly embarassing. So I laughed and made light of it, joked about my drunken walk to communion (my balance is off, too) but one has to wonder what people think.
Sigh.
So try to laugh and be amusing but inside I am curling into myself and wishing I could vanish.
I'm just waiting for the moment I become incontinent and don't realize it. Hoo hah.
But I'm sure I'll make a joke out of it.

MS Society of Canada - MS Updates

2011-07-14T16:41:00.000-04:00

MS Society of Canada - MS Updates

Updates on the CCSVI studies funded by the MS Society. Looks like lots of progress is being made. Results probably early next year...

CCSVI and the lure of the "benign"

2011-07-08T16:51:00.000-04:00

One of the points CCSVI advocates make is that the treatment is benign, that there are few, if any risks, that it may as well be done as not.
I'm a nurse and I have to tell you the thought of introducing a catheter to any part of my body (but especially the vascular system) fills me with a bit of fear.

I know I'm a chicken. All of my rellies died of cancer (just about) by the time they hit 60. So the fact that I am on a long term immune system modulator gives me pause, lemme tell you. Every time I inject the copaxone, I think about how a. they are not completely certain how it works, b. it doesn't seem to slow the eventual progress of the disease, just reduce flare-ups and maybe lesions, which everyone agrees don't really predict disease outcomes, c. how since I've been on it, my body doesn't swell up with mosquito bites any more and how weird that is and how there may well be cancer cells sneaking around my body at this VERY MINUTE looking for a good place to lodge and grow, happy and healthy.

I'm on an antidepressant, too - started before my diagnosis, and it's supposed to be doing something for me but again, no one knows what, or whether the depression is caused by the MS or just a reaction to it or to the constant pain, or whatever. I've withdrawn from antidepressants before and it is some scary stuff, believe you me. They obviously do something altering to your brain and I'd feel a whole lot better if somebody could show me the "insert tab a into slot b" directions for how it worked. But they can't.

Why does the thought of a catheter thingie seem more risky than these steps? Well, I've seen the damage from bad insertion of things (some jokesters might say - like my kids...- but I love them, so perhaps not..) I know that whenever you put something into your body of the metal or unnatural kind, in places where things are not usually put, you get some damage. Could be little damage, and worth the risk - such as when you get a screening colonoscopy (which also result in some poor outcomes, however) - given the risk of the alternative. Placing a stent in your heart, for example, is not just one of those things you get done cheerily and wander off to be your regular self. There is damage caused by the manipulation of tissue that is normally protected.

I've always had troubles with my neck, being a short person with significant stenosis and a lesion or two back in the spinal column. I fear chiropractors manipulating there ever since I heard of strokes caused by neck manipulation. So the thought of a snaky tube going up through those vital spaces fills me with fear.

And yet, the thought of a potential cure for the awful symptoms I live with every day is tempting. Being part of the study that is being done on all those here in Canada who are being followed up for the "treatment" interests me, too - after all, some days I don't feel I am much use except as a medical curiosity. Every day I take up my arms in battle against MS. Sometimes it is wearying.

But I've never viewed the procedure as benign. And of us who have had urinary tract infections after a catheterization know of the risk of introducing illnesses. Many people coming back from India where they have had medical care end up bringing along a superbug with them, which then spreads throughout our hospitals. And others have other bad results, from spasms to neck problems to this latest report - death by stroke.

This poor woman. She was basically healthy, had symptoms that were nasty, and the certainty that they would most likely get worse. But the hope of this "benign" procedure was held out to her - and she chose it - and she lost, horribly. I know everyone has the choice in this case, but isn't there some responsibility for the medical profession to give the right advice? And maybe she received all the information and decided to continue, I don't know. But if you read the article, some interventional radiologists don't think they should be offering an untested procedure.

Brant-Zawadzki refuses to do the procedure even though people with MS are clamouring for it.

"I do think that physicians themselves believe they're helping these patients, but unconsciously there's an enablement going on of what could become self-harmful, if not a truly self-destructive process."

http://www.cbc.ca/news/health/story/2011/07/08/multiple-sclerosis-ccsvi-death.html

I've met a lot of people with chronic illnesses who do become self-harming with the various treatments they take - before I was diagnosed, I was told I had fibromyalgia. One of the members of the support group was choking back guafenisin to treat herself based on a protocol someone had created - a dangerous idea, as the side effects are grim. Others are taking opiates for the pain, gradually increasing the doses until they become at risk of falling or doing damage to others.

It sucks having a chronic, incurable disease. We all want a magic pill. But we need to be sure it isn't more of a Snow White apple, laced with more poison than benefit.

My deepest sympathies to Maralyn Clarke's family.

A positive outcome from the CCSVI urgency?

2011-07-03T17:59:00.001-04:00

Good news today from the worlds of MS research. As a doubter of the CCSVI hypothesis (but still interested in hearing about it, as aren't we all!), I was excited to see that research in other areas is stepping up as well. An evil drug company is collaborating with the UK National MS Society to work on research that focuses on neurprotection and repair, two areas I find most valuable. And fascinating. And perhaps globally useful for other forms of brain damage...

The funding is for innovative research, and given to universities and non-profits as well as a separate fund for for-profit agencies focused on making medications that will give money. The innovations in research funding is the sort of program that allows university researchers to explore new realms and perhaps come up with results that answer more than the initial question.

I'm also interested to hear about the areas of research - while they are looking at the causes of the inflammation occurring in MS, they also seem further ahead than I knew. I didn't know we had knowledge of the ion channel changes or the sodium/calcium exchanger roles in MS. Fascinating stuff, if you like the biochemistry side of things, and a real source of hope if they can fix these cellular changes. Who knows if CCSVI helps these changes occur, but since the procedure seems to be limited in its effect, and require re-treatment, wouldn't it be nice if we could treat the outcomes, biochemically, of whatever changes are going on in the brain, whether infectious or not?

I dunno, but I am encouraged there is progress going on in all sorts of areas of MS research and that everything, from the large interventions to the tiny ones, is being examined. Maybe all the press about CCSVI helped, though this collaboration was created before Dr. Zamboni's study was released. Let's hope all the noise leads to increased and improved research in all areas of MS. (Bolding is mine)

http://www.prnewswire.co.uk/cgi/news/release?id=326120

Merck Serono and Fast Forward Announce Recipients of Funding for Multiple Sclerosis Research

GENEVA, June 30, 2011 /PRNewswire/ --

Merck Serono and Fast Forward Provide Funding of Over $1 Million to Accelerate Early Stage Research in Multiple Sclerosis

Merck Serono, a division of Merck KGaA, Darmstadt, Germany, and Fast Forward, LLC, a not-for-profit organization established by the American National Multiple Sclerosis Society, today announced the second group of recipients to receive funding through their collaboration, which is designed to speed research advances in mutually selected, high potential areas of multiple sclerosis (MS) research.

The awards total over $1million and will be distributed from two funds created by Merck Serono and Fast Forward to encourage early stage drug discovery for MS: the Accelerating Commercial Development Fund which is allocated to development programs for for-profit entities and the Accelerating Innovation Fund which is allocated to innovation projects and available to university-based investigators and seed-stage for-profit entities.

Merck Serono and Fast Forward distributed a call for proposals to fund projects focused on central nervous system neuroprotection and/or repair strategies. These priority areas were determined by a joint steering committee comprising Fast Forward staff and representatives from Merck Serono.

The following organizations will receive funding:

Under the Accelerating Innovation Fund:

Howard Florey Institute, Carlton, Victoria, Australia (Project Director - Bevyn Jarrot, Ph.D.) will receive $275,000 over 12 months to advance the development of molecules that target Na_v 1.6 ion channels. In MS, there is a change in these ion channels, which contributes to abnormal nerve function. This project will focus on molecules which could potentially prevent this abnormal function, thereby protecting axons from further damage.

The Gladstone Institutes /UCSF (Project Director-Katerina Akassoglou, Ph.D.) will receive $300,000 to conduct testing for the identification of small molecule inhibitors of microglial activation. Microglia are part of the resident immune system in the brain and spinal cord. Activation of microglia in MS is thought to contribute to the inflammation and nerve cell damage associated with MS. In the funded studies, the investigators will focus on developing novel molecules that have the potential to inhibit the activation of microglia in MS.

Under the Accelerating Commercial Development Fund:

Axxam SpA, Milan, Italy (Project Director -Michela Stucchi, Ph.D.) will receive $430,590 over 18 months to advance the development of small molecules that target the sodium-calcium exchanger NCX1 on axons. NCX1 functioning in reverse mode is thought to cause nerve cell death in MS. Axxam is developing molecules to prevent NCX1 activation and thus prevent axonal injury and ultimately clinical disability in MS.

"We are pleased to announce the 2011 funding recipients who will work to advance exciting early-stage projects in MS," said Dr. Bernhard Kirschbaum, Merck Serono's Head of Global Research and Development. "We are committed to advancing research that has the potential to improve understanding of the disease, and ultimately result in the development of therapies to help people living with multiple sclerosis."

Merck Serono and Fast Forward entered into an initial two-year, worldwide agreement in March 2009, and recently extended the collaboration. As part of the up to $19 million collaborative agreement with Fast Forward, Merck Serono provided the majority of funding for the research awards, with Fast Forward contributing 10 percent of the total financing of the awards disseminated from each of the two funds.

"The potential of multiple sclerosis research currently in progress around the globe holds great promise for improving the quality of life for people living with multiple sclerosis," said Dr. Timothy Coetzee, Chief Research Officer at the American National MS Society and Fast Forward. We are pleased to have the opportunity to advance that promise through the continued collaboration between Fast Forward and Merck Serono. Our commitment to furthering research that will end multiple sclerosis remains steadfast, and we look forward to learning more from the results of these innovative research projects."

Photo from: http://gam3avoice.com/library/?tag=function-of-the-neuromuscular-junction

Whoopi Goldberg and I

2011-06-30T12:29:00.000-04:00

Um.
I've gotten sortof used to having my legs not work particularly well by the end of the day. I expect that. But I absolutely HATE those days when the muscle controlling my bladder exit decides to do its job in a sloppy way.
It's warm. I don't like the three underpant days when it is warm. Or anytime, actually. I spend my time gazing at washrooms and wishing I was a man with a longer tube. I don't feel the urge to pee, until it is too late. I don't seem to be able to empty fully without abdominal support. And I hate hate hate the thought of wearing a pad that will hold the pee like a baby's diaper. I dread the smell oozing out around the edges.

There are so many indignities with this illness. I'm okay with a lot of the things that bother others - using a cane, staggering, forgetting things, getting lost, storing the milk in the oven, losing my balance. But there are a couple of things that mess with my head.

Losing my vision terrifies me. And incontinence is just unspeakably awful.

I am supposed to drink much fluid to avoid growing more kidney stones. How? I'm supposed to be (and like to be) a sexual being - how? I want to be pretty - how, with the miasma of stale pee surrounding me?

On the good side, my dog finds me intensely interesting, and picks up any undies I discard momentarily onto the floor. I'm thinking of training him to take them to the washing machine.

Which he likes anyway, since recently, it smells a lot of pee.

I can only hope this, too, passes. Pun intended.

Zoom Zoom!

2011-06-25T10:34:00.000-04:00

Every once and awhile I wonder about how long I will be allowed to drive. I'm distractible, yes, but it's the leg twitching and such that really could make it impossible. Then I run across this article: http://www.sciencedaily.com/releases/2011/06/110617080818.htm
Cool.
Check it out....

Being positive and all that crap

2011-06-19T18:23:00.000-04:00

Well, it's sunny. I am wearing my favourite turquoise shirt. I can still see well out of my left eye. I'm almost done a huge project. I managed to make goodies for church. People seemed to like them.

I did bring the goodies half an hour late, though, having forgotten the time of church. Because I've only been about 10 times already. Last week, though, I had a meeting a half hour later, so that information supplanted what I had had in my brain.

I got the results of my neuropsych assessment the other day. The results weren't that surprising, but the "instructions to employers" made me want to sit down and cry. Apparently I am so distractible I need small chunks of information as a time. I need people to look me in the eye to ensure I am paying attention. I can't be expected to do boring jobs. If I have a project, I should plan to do it in 10 minute segments, alternating with other jobs and breaks, so that I can maintain focus.

Well, heck, I've been doing that for ages, just not deliberately. I start something, get distracted, start something else, realize I've forgotten to finish the other thing, and so forth. I frantically try to order my environment, but I get distracted and put down a paper here, my glasses there. Then I can't see, so I go looking for my glasses. And after I find them I have no idea where the paper is. Maybe the dog ate it. At least I think I have a dog. He's here somewhere.

Some days, as they say, it isn't worth chewing through the restraints.

Today, walking without my cane and experiencing total fallabout by the time I'd got halfway around the route, I wished for restraints. And a comfy bed.
Today, as I hustled into church late, I wished for restraints, or a calendar that beeped at me more regularly. I need to put alarms on EVERYTHING and that is annoying. Especially as I forget to enter stuff into my calendar or add the alarm.
And then there are those moments of "inappropriate sharing", when I wish my mouth had a bit of a restraint. But that would require the memory to remember what effect my talking had had before, plus the ability to read others, which I seem to be losing.
Aw heck. Better go out the dinner on, and then sit right by the oven, so I don't set fire to it. It's just SUCH a good mental day.
And we won't get into the pain. I wish I could forget THAT.
Oh Goethe, you rock.

Driving just isn't the thrill it used to be - or maybe it's a thrill in a different way, rather

2011-06-13T13:33:00.000-04:00

When my dad was dying of cancer, he was pretty drugged up. I remember looking at the bottles of opiates and pain killers of a variety of sorts piled on the kitchen table, and seeing him choke down handfuls of them to keep away the endless pain he suffered. Then he'd get into his car and drive. It was terrifying but in reality, he still drove pretty well. I'm certain he was impaired, but he'd driven in the area for so many years that it was almost automatic. The big risk was from unexpected events. I sat very quiet when he drove and tried not to be distracting...but he just didn't want to give it up. For him it was freedom, life, a sign he still was who he had been.
My MS is starting to affect my driving. Part of it is the lack of familiarity of the roads around here, some of it is a leftover from an optic neuritis bout, some of it is my distractability, and I'll bet the GPS lady isn't really helping, either. I need to get a more global view of Halifax/Dartmouth rather than the tiny view in the GPS window. But it's a bit scary. And I hate the thought of losing an ability to drive. Like my dad, it's part of my identity. I drive well, overall. I like being able to just take off if I want to. I like the idea of the convenience, the help for me and my difficulty walking, the sweetness of not having to carry piles of groceries from pillar to post.
But my life is getting limited. Tonight, for example, I was supposed to go out - but it is raining, and I know the roads will be covered with shine and glare when dark, and I can't handle all that visual input and drive at the same time. It is totally overwhelming. And dangerous. So I'm staying in.
At least til I get my new glasses. And the ON calms down. Then we'll see. As it were. Because I don't want to give it up. Not yet.

What's up with the brain?

2011-05-29T08:52:00.000-04:00

I would venture to say that those of us with MS probably know more about the brain than other folks. After all, we live with it changing every day, we see the effects of these changes, we adapt around them as we can. A friend of mine posted an interesting article about the 10 myths about the brain: http://www.smithsonianmag.com/science-nature/Top-Ten-Myths-About-the-Brain.html and I found it rather entertaining to read, knowing what we MSers know.
To quote:
1. We only use 10 % of our brain: well, with MS, we pull in recruits from all over the brain for the littlest functions, covering for the areas where black holes cause transmission losses. We can see it on fMRIs - while others may use a curlicue of brain activity, we use a spidernetwork...no wonder our brain aches!

2. "Flashbulb memories" are precise, detailed and persistent: Hey y'all? Remember that guy's name? Or why you are storing the iron in the fridge? Or where the iron is this time?

3. It's all downhill after 40, 50 60 - ah, the luxury of time. Actually, those of us with MS know we have to keep our brains active and use them all the time, or the slippage is truly magnificent. We are on medications that muddle our heads, too, all to keep our cranky bodies from misreading the messages from on high and pushing us into spasms and twitches. They make us foggy. But first thing in the morning, we rock. Ask us anything. Just not after 3 pm.

4. We have five senses: The authors here argue that we also have proprioceptive senses. Those ones that tell us where we are in space. I laugh. Hollowly. As I fling my body here and there. Something about losing the sense of touch and balance does something to that proprioceptive sense. I personally often think I am standing up straight when I am actually leaning slightly to the left (political reasons, sorry) and thus I weave elegantly like a sailboat in the wind. And don't ask me where my foot is at the moment. It could be anywhere. I assume it is at the end of my leg, but unless I look, I can't really be sure of that. Same goes for one of my breasts. Unfortunately my stomach remains.

5. Brains are like computers. He argues this is a myth. I argue our brains are like computers using Windows (TM).

6. The brain is hardwired. Well, we know it's plastic, in our case somewhat like silly putty, given to recording images that get stretched as we play with them and melting into a flat disk if not played with...Hey, if we didn't rely on brain plasticity we'd be staring into the air, gasping slightly. Hurrah for plastic brains! Although if I am told to play Sudoku ONE MORE TIME, I am going to explode. Not all of life can be reduced to squares of numbers. I prefer to struggle with learning to play the ukulele. Many good returns from this - music is multitasking for the brain, plus if I learn to play it well enough I can use it to annoy all my friends and relatives by singing "tiptoe though the tulips". Plus it hides my tummy.

Well, I could go on, but you get the idea. Life with MS is an exploration of the brain in all its marvels, whether we want to or not. Betcha you didn't know you could have hiccups anywhere, did you? Try them in your toes for a treat.

Heading out for the MS walk today, where I hope to be able to persuade my brain to let my legs do their thing without interruption. Lately it's been telling my glutes that knotted up is the way to be. Makes it hard to do that forward swing thing so I look a bit like Tim Conway doing his old man impression. Mind you, I laugh at the thought of him, so maybe that's a good thing...

http://youtu.be/i_AwOIs2buE

Is it all about the poo?

2011-05-24T10:14:00.000-04:00

My brother sent me on this podcast http://feedproxy.google.com/~r/freakonomicsradio/~5/VZ-2GFkkQrU/freakonomics_podcast030211.mp3 from freakonomics radio about how a man with MS was "cured" by getting a fecal transplant. Apparently, if we have bad germs in our guts, we can get some good germs from someone else's poo and allow them to inhabit our guts. This will remove the harmful bacteria that live there and therefore return us to health. Assuming they beat up our bacteria and take over.

It's an interesting point. If we are, as described in the podcast, 10% us and 90% bacteria, there's something to be said about reorganizing our friendly colonists (pun intended) to be more friendly. And, after all, that discovery of H. Pylori and ulcer causation revolutionized the treatment of ulcers.

And, truth be told, there is much research to indicate that MS is probably infection-related, given that it involves an autoimmune response that must be triggered somehow.

I'm not sure about having a poo transplant, though. There's a lot of nasty stuff in poo, much of it I would not want to visit. Montezuma's revenge, cholera, who knows what else. I'm reminded of the rabbits of Australia - brought on for hunting, reproduced like mad, then they had to treat the rabbit problem, and lost control of that, too.

And I can't help but wonder if some of the same magic thinking is going on here that hangs around those in support of cleanses. Our digestive tract is full of little creatures that change and reproduce and wriggle about depending on what environment we give them. I think they'd be hard to manage long term.

The fellow they interviewed said that he was all better after his treatment, but time will tell. Relapsing-remitting MS is a trickster that way - you can think you have it beaten and then it sneaks up on you from behind (har har). I hope he stays well. But it's another tale of anecdote not making scientific proof.

I'm not signing up for the randomized controlled trial, though.
Ewwww.

Being funny...

2011-05-23T10:27:00.000-04:00

I was at a MS support group the other day and joking in that graveyard way a lot of us with MS have about the changes in the disease, the weird things that go on, the humour in our everyday challenges. It seems to me that a lot of us with MS have that kind of humour - there isn't much that can be done for the disease, so we may as well laugh and get on with things. As we can, lurching merrily about and etc, dropping things, wobbling here and there...

But one lass took exception to our joking about. She was seriously upset about MS and felt we weren't taking things with the right sense of gravitas. She was right. We weren't. Right then.

MS is so often invisible because we don't get seen when we are down and out. We go to ground, we hide at home, we don't answer the phone, we rarely speak. We deal with our sorrows and losses privately, knowing that there is a limit on what we can expect friends to tolerate, that daily complaints just bring us down, that our private struggles don't make for good press. The disease doesn't go away, it doesn't get better, we aren't "fighting" it like one does with cancer (because fight as we might, we can't beat it). It becomes boring to share. Even a disease like MS that changes every day can become same old, same old.
This doesn't mean we don't spend several days of our lives destroyed by grief, or struggling to get anything done, or depressed to black.

When we get together, we share our challenges, but we also have a good laugh. People who don't deal with this chimera of a disease don't understand what we go through, and it feels so good to laugh with those who can nod and add to the joking. It helps. Like this drawing by Bill Watterson, seeing others laugh can't help but make you smile.

So I say, let's laugh, giggle, snort, guffaw, and hoot this disease into the corner as often as we can. It will creep out again, but let's enjoy our sorrow-free moments. Let's wallow in them.

A kiss is just a kiss....

2011-05-17T17:23:00.000-04:00

Epstein-Barr virus

But "kissing disease" (Epstein-Barr virus) can be that gift that keeps on giving...
I had mono my first year in University. Sick as a dog, I was. Sicker than your average dog, in fact. What really burned my hide besides the fact that it nailed me neatly in time for exams (I slept through my biology exam) was that I HADN'T KISSED ANYONE for months before I got it. It seemed unfair. Should have the kissing, anyway, if you're going to suffer with that stuff. It was nasty.
The next year, my dad was diagnosed with non-Hodgkin's Lymphoma. Apparently it is related to Epstein-Barr viral infection, which he had had in university. He fought it, bravely, for 10 years, gradually whittling away to a pencil stick of a man who gleefully ate hot fudge sundaes while I tried to diet and then told me over and over again how wonderful they tasted. "Let me describe it to you," he'd say. "It'll be almost like the real thing." He was so thin I didn't begrudge it, and we snorted with laughter at each other, me trying to get skinny, he trying to get fatter. But when he was diagnosed and they told him about EBV, I felt a little shudder run up my spine.
Then I get diagnosed with MS, the first in my family to do so. And as I read about the condition, I see that ol' EBV raising its ugly head again. Surely they could come up with a vaccine for this? They've managed one for chicken pox, another herpesvirus - I know vaccines for herpesviruses are challenging because of these viruses' nasty habits of hanging about forever in your nervous system (think shingles, that other herpes that we all hope never to have to explain to anyone, etc.). But I'm beginning to think that those of us who do get really sick with EBV have pretty serious risks of developing other nasty and healthcare expensive things. Might be worth the investment.
And I'm not the only one...
Whaddya say, big pharma? Got any vaccine in that pipeline for MS prevention?

http://cordis.europa.eu/wire/index.cfm?fuseaction=article.Detail&rcn=26753&rev=0

A virus similar to herpes could be a risk factor for multiple sclerosis

Publication Date: 2011-05-17	Olivia del Carmen Santiago Puertas Universidad de Granada
Granada Spain oliviasantiago@ono.com Tel: 34 958 242 071 http://www.ugr.es/
At present, while there is no cause known for this condition, patients with MS seem to have genetic vulnerability to certain environmental factors that could trigger this condition, such as the Epstein-Barr virus. Scientists at the University of Granada have found a relation between the Epstein-Barr virus –which belongs to the herpesviruses family–and the development of this condition

The Epstein-Barr (EVB) virus –belonging to the herpesviruses family, which also includes the herpes simplex virus and the cytomegalovirus– is one of the environmental factors that might cause multiple sclerosis, a condition affecting the central nervous system, which causes are unknown. This has been confirmed by University of Granada scientists that analyzed the presence of this virus in patients with multiple sclerosis. Researchers analyzed antibody levels, that is, antibodies that are produced within the central nervous system and that could be directly involved in the development of multiple sclerosis. Multiple sclerosis is a demyelinating condition affecting the central nervous system. Although the cause for this condition is unknown, patients with MS seem to have genetic vulnerability to certain environmental factors that could trigger this condition. While other studies have tried to ellucidate whether infection with the Epstein-Barr virus could be considered a risk factor in multiple sclerosis, what University of Granada researchers did was conducting a meta-analysis of observational studies including cases and controls, aimed at establishing such association. A 151-patient sample In a sample of 76 healthy individuals and 75 patients with multiple sclerosis, researchers sought a pattern that would show an association between this virus and multiple sclerosis. Thus, they determined the presence of ant¡bodies to Epstein-Barr virus antigens synthetized within the central nervous system. Simultaneously, they identified viral DNA to measure antibody levels to EBV within the central nervous system, and the presence of EBV DNA respectively. This piece of research was conducted by Olivia del Carmen Santiago Puertas at the Department of Microbiology, University of Granada, and coordinated by professors José Gutiérrez Fernández, Antonio Sorlózano Puerto and Óscar Fernández Fernández. The researchers found a statistically significant association between viral infection and multiple sclerosis starting from the detection of markers that essentially indicate an infection in the past, while markers that indicate recent infection or reactivation are not relevant. The researcher Olivia del Carmen Santiago Puertas state that, as the factors triggering this condition are still unknown “studying them is important to try to develop a prevention method”. This study found an association between MS and some viral infection markers “but, to obtain a definitive conclusion, further research is needed with a significant number of patients that combine different microbiological techniques, where the different viral infection markers are recorded, and assessing patients’ clinical state even years before the onset of the first symptoms of multiple sclerosis”. References: - Relation between Epstein-Barr virus and Multiple Sclerosis. Analytic study of scientific production. European Journal of Clinical Microbiology and Infectious Diseases. 2010. - New Strategies and Patent Therapeutics in EBV-Associated Diseases. Mini-Reviews in Medicinal Chemistry. 2010. Contact: Olivia del Carmen Santiago Puertas. Department of Microbiology, University of Granada. Office phone: +34 958 242 071. E-mail address: oliviasantiago@ono.com

Subject: 39; Country: Spain; Institution: Educational Body (School, University); Category: Result;
RCN: 26753
Quality Validation Date: 2011-05-17

Arrgh. I feel like a pirate...

2011-05-08T11:21:00.000-04:00

I think I might have been doing a bit much. Today I have a left eye twitching like Inspector Dreyfuss, my right foot seems to have forgotten how to hold its bones together, my left foot wants to do toe taps, and I've developed a wide stance and walk. And for some reason my right buttock thinks it needs to knot up. I'd write more but my vision is on strike. The only difference between glasses and no glasses is a qualitative change in the impressionistic view of my world. Whew.
I think it's time for a spot of lunch and a nap. And then some stretching. Maybe I can peel off the pirate cap after that and regain some sense of normalcy.

that MS Waddle...

2011-05-05T16:49:00.000-04:00

Well.

I am just getting sexier and sexier. Met up with my wholly amusing and quite wonderful new neurologist today (these happy health care providers are throwing me off - everyone seems to be having a good time and it's even been raining for over a week straight) and he made me walk across the room and said, "Ah yes, that wide stance walk to keep your balance. Hmmm." I hadn't thought about it much before although I know I have times when I stomp about like a sailor on shore leave, striding this way and that, but apparently now, even on short walks, I've developed an attractive waddle. Nice. I blame my right hip flexors, who don't seem to be getting the message these days about locomotion - and my left foot, that insists on dropping to catch the ground with its toe. It makes an attractive sight.

And today, it made for an almost fall and a twisted ankle that made me shout. Fortunately, Chutney the magnificent therapy dog was with me and proceeded to drag me forward with his leash and tangle himself around me and a tree to stabilize everything. He is so helpful.

So, to add to my middle aged spread, I've developed the "here's me head, me behind's coming" walk that my mother used to spot in others, plus a wide enough stance that this same mother would argue I looked "ready for anything". She really was a shocking woman.

As for me, I think I'll take to using that cane thing. Could be more debonair than waddling.

I'm a walker....sigh...

2011-05-03T11:11:00.000-04:00

https://msofs.mssociety.ca/2011walk/ORSCentre.aspx?L=2

I've been part of the MS walk for 4 years so far. It's been a challenge every time. The first time, I walked it with relative ease. The second time, I staggered with my cane, and was in intense pain by the end. The third time I volunteered and helped empty garbage and fill out surveys, which required me to stand all day and which put me in bed for a week. My plan was to avoid the walking part, which I felt was getting beyond me.

This year, I'm in a new location, and the walk approaches quickly. I should call and offer my volunteer time, but I'm fairly sure they are well covered for the coveted sitting positions already, and I'm in recovery from my move here to rainy Dartmouth, and even volunteering seems too much for me right now.

I've been lucky with my MS, in that I haven't had the sort of acute flare-ups that require hospitalization, etc. I think part of that is just that I don't bother calling the docs when I feel rotten - I just go to ground and wait til it goes away. But I've had a bad few months, and things are, alas, getting worse. Foot spasms are now my constant companions, and my legs give me grief whenever I walk - my hip flexors just aren't that enthusiastic about the whole movement thing. My vision is often misaligned, and vertigo and I hang out fairly frequently. My glasses no longer work for my right eye, the one that had the optic neuritis before. It's like a slow erosion of abilities. Fortunately, it's SLOW. I am so grateful for that.

My brain testing did reveal I have lost cognitive abilities, too. Nothing to keep me from driving, YET. But that lurks ahead, too.

But hey, I'm an old lass. I've had fun, I've inner tubed the glaciers on Mt. Rainier, I've walked through Yellowstone, I've travelled in Europe, I've had a career that was rewarding and helped others. I've raised three wonderful kids and delight in them. I feel most for the younger people who get this diagnosis - they need a cure, they need better treatments, they need to be able to live a life like what I have had so far. My life isn't over by a long shot, but I am content to settle a bit, to change my focus, to give up some pleasures, having had the chance to experience them. Those younger MSers deserve that option, too.

So I'm going to haul my tired self and my glamorous cane and my puppy out to do the walk again this year. I probably won't be able to walk the whole way, but I'm going to give it a try. It's important.

I'm hoping those that read this blog feel like donating to the MS Society - it's easy to sponsor me - there's an online form (click on the link above), or you can mail your sponsorship in. Every tiny bit counts. The Society has been a huge help to me, and I'm looking forward to working with the new chapter here. They offer client services that keep people with MS and their caregivers better off than they would otherwise be, with support for devices and referrals and information and helpers. They fund research that is progressing quickly, especially now that stem cell research has been approved in the US. Help me help those that follow me. I'll do what I can.

Thanks.

Examining the brain...

2011-04-02T12:56:00.000-04:00

Went for my neuropsychiatric testing the other day - a full day of brain tests and questions of vocabulary and memory things and attention stuff. Was totally exhausting, and I could barely drive home - arrived back, called the kennel to take care of the dog for another night, and sat, too tired to eat or move for the evening before I fell into bed.
So, what are the tests?
Some of them were silly for someone with MS - depression inventories aren't accurate if fatigue is your constant companion. You do sleep more than usual, you do cut back on social activities, you do lose interest in sex and other things you enjoy just cos you are pole-axed tired most of the time.
Some of them were silly for someone with an extensive vocabulary and multiple degrees. Defining words that are monosyllabic is not a challenge, even if I am slipping. Reading familiar words aloud would only be a problem if I had severe muscle involvement or significant dementia.
Math - more challenging. Trying to figure out patterns - difficult. Understanding instructions for one test was almost impossible for some reason - I started off wrong, and when the kindly psychologist explained it again to me, I still had difficulty processing what I needed to do.
Paired words weren't too hard, although it took me 4 tries to get most of them. What was most astonishing was the complete vanishing of the information - usually one has a "tip of the brain" phenomenon, where you try to retrieve things and a variety of options present themselves. No options presented themselves. It was dark inside there. I could hear crickets.
Counting backwards was tough until I figured out the pattern. Took me a while, and if I did the math correctly, the letters I was supposed to remember were not available to my conscious mind - yet I could say them, often. Weird. It's like when I type and words come but my mind is blank. Very very strange.
I think, generally speaking, I did okay on most things, but it wasn't fun. If I had had to do anything after the testing, I would have crashed. I was almost in tears by the end of the day.
I should point out kindly Psychologist did offer to break the session if I was tired, but I wanted to get an idea for how I would perform after a full day. I'm still tired now, two days later.
I get my report in a couple of weeks, just before I leave. I'm wondering what they'll show.

Oh blessed drugs!

2011-03-28T13:45:00.000-04:00

One of the things about this foolish, changeable disease, is that you have to do so much self-management, sometimes in spite of your doctor. One can always hope to be on the same wavelength, but occasionally the focus differs and you have to think it through yourself. My neuro told me that the Baclofen I'd been prescribed by another doc for spasticity wasn't really needed in my case since I didn't have any spasticity.
Well, true, then I just had twitches, not spasms. So he gave me drugs for twitches. Fair enough.

But I've been unable to walk more than a block without pain for weeks now. Some of it is no doubt due to the kidney stone thing, but even once it was gone, my legs weren't working together. One foot spasmed regularly. Pain and I became close personal friends. And as someone whose big kidney stone was found halfway down the ureter (and I was in minor discomfort), when I feel pain, it should tell me something.
So today I decided to try a baclofen. And you know what? It worked. I just came back from my first fast walk in weeks. My legs worked together with my knees and I could hoof it as I like to, fast enough to satisfy even the rampant poodle. My hips swung along like they are supposed to, easily, cheerfully, enjoying the movement. It was f-ing amazing.
Motion is so wonderful to experience when you've lost it for awhile. There is something so mystical about the way a body works together, the way the hip swings in the socket, the way the shoulders move within the framework of muscles, the support and flexibility of the spine. I am almost giddy with the joy of it all. Those of you, who can move easily - go for a walk. It's a true gift.

2011-03-28T13:34:00.001-04:00

What MS means to me

2011-03-14T11:12:00.000-04:00

Sheesh.
The National MS Society in the US has created this blogging thing where you can write in what MS means to you. Sometimes I think they just have their heads up their respective arses, if you'll pardon my language. I THINK they were looking for positives. It seems to be a current theme on some of these websites that you should be thinking "I have MS, MS doesn't have me" and talking about all the good stuff that comes into your life because of MS, blah blah blah.
Well, I'm as Pollyanna-ish as the next person, possibly more, and I try to see benefits in whatever life throws at me, but by GODS it is offensive when people who do not have MS come up with these campaigns. "MS means rallying around the ones you love" is an example.
Erm, don't mean to be snarky, but has anyone looked at how many of us live ALONE with MS? Hmm? And that we may not have people available to "rally around" us? I have some lovely friends and family, don't get me wrong, but I would wear them out if I told them all that was going on with me. They'd drop me quicker than a hot iron. And why not? They are all busy with their own concerns - sick parents, health crises, kid issues, rocky marriages, life. As Rick says in Casablanca, "Our problems don't amount to a hill of beans..."
But enough of that. The thing that stinks is that no matter how much you say to yourself that "MS doesn't have me", you are lying to yourself. It has its cold fingers round your throat, right enough. It lurks, waiting to screw up your life. You can take care of yourself, you can eat right and smile and read positive things and breathe pure air and yet, it's there, waiting.
So hey, my approach is to just laugh it off. Life is short. So what if I can't feel my fingers while I type this? They still type almost as well as they ever did - today. And walking? I always preferred the sitting and having coffee afterwards anyway - it's just that now I have to plan to do it sooner. Biking? Well, unless I get a better helmet, it's over for me - balance issues - but hey, I've always wanted an adult trike.
Reframing loss is one thing, but laughing at it is even better.
Sometimes, though, it isn't so easy. Sometimes Pollyanna leaves the building. Sometimes getting mad is the only solution, since self-pity is SO unattractive. Which is part of the reason I tell myself I have Mad Sow - craziness notwithstanding.

"It's hard to take over the world when you sleep 20 hours a day." Darby Conley

2011-03-03T08:32:00.001-05:00

I foolishly signed up for two writing classes recently, running concurrently. In the middle of them, I've now decided to move to Dartmouth, NS. I'm having some difficulty with all of this. See, right now, my body is demanding a healthy sleep in, a nap from 1:30 to 4 or 5, and then early to bed no later than 10. It's hard to fit everything in to a day truncated like that, and I now understand why dogs and cats, despite their enviable smarts and ability to control us, have yet to take over the world.
Fatigue in MS is a weird thing. Sometimes, it feels like water is welling up and gradually flowing over my head. Sleep is irresistible, exhaustion so complete that even eating is too much to contemplate (those of you who know me know this is serious stuff). It feels like a remix of the mono I had in University, where all I could think of was sleep. glorious sleep. I sleep sitting up, I try to make it to lying down. If I'm walking, my legs no longer move effectively. My batteries shut off.
Sometimes, the fatigue is cerebral. I can feel okay physically one minute, and then lose my mind the next. Can't talk, can't bear talking, can't even think of a thing to say. My lips don't want to move. Making decisions is almost impossible. I feel trapped within myself, deadened, mute. Even my hearing doesn't seem right. My vision blurs and I can't see well anymore. Parts of my visual field fuzz out entirely.
Sometimes, when I am feeling tired, if I get up and exercise, I can feel better. Sometimes the thought of that is just too much to bear. Sometimes, when I am tired of speaking, I can still write. Sometimes I can't even read.
It's bizarre, and just when I think I have it figured out, it eludes me again. For awhile I was mainlining coffee to cope, but that doesn't seem to be doing it for me anymore. I do know that if I go out at night, I need a coffee to see me safely home.

So, in the end, I wind up like Brain, planning to take over the world - tomorrow night.

Danger, Will Robinson!

2011-03-01T10:30:00.000-05:00

The other day, I headed out to get in my car and drive to an appointment. I pushed the usual button on the elevator, rode down, and when the door opened, I had no idea at all where I was, or why I was on that particular floor. I froze, not knowing. I backed up into the elevator, looked at the buttons uncomprehendingly. My building is a bit confusing in that the front door is on the second floor; the ground floor is #1 and leads to the garage and laundry room and a street exit. But I've lived here for 21/2 years. It should be fairly second nature to me.
I panicked a bit. Just a little, in a sort of wtf way. Shook my head and decided to try going down the hallway - and once I had walked about ten steps, it became clear where I was.
It's one of the few times I've had that experience. The other brain things that happen are forgetting the names of people I've known for years, losing any concept of numbers, gradually losing everything around my apartment.
Right now my place is a mess, with way too much stuff piled around in messy heaps because I am trying to clear everything out I do not need and reduce my moving costs.
I feel as if my brain is floating rather unattached. Perhaps it's just this that has me confused. I hope so!
Danger! Danger!

Reviewing the CCSVI research..

2011-02-26T13:57:00.000-05:00

In my role as education person for the local MS Society, I've been called upon to try and figure out a presentation re: CCSVI. The only problem is that little research has been completed to date. There are status updates to the research funded by the MS Societies on their pages, but I went wandering through the other research looking for something else that might have been done.
Here are my conclusions:
Anyone associated with Dr.s Zamboni, Haacke, Simka, or their research institute have found that CCSVI has positive results. Sample sizes are small, and my impression is that the several published papers resulted mainly from the same study set.
Anyone who is a neurologist finds no benefits from the CCSVI procedure. Their study sizes are also small, except for one study that looked for brain ferritin levels (following the iron damage hypothesis) which looked at 1408 patients with brain disorders and normals and found an increased amount of ferritin in people with various forms of MS and brain damage of other sorts.
Interestingly, studies by interventional radiologists also don't find a positive association between CCSVI treatment and MS improvement.
"Improvement" is, as has been said before, stated in terms of fatigue level improvement, some sensory improvement. As someone who is dead tired all the time and numb from stem to stern, this sounds vaguely appealing, except for the costs. And the transience of the improvement. The study summaries are below.
The small sample sizes are a problem, as so much difference can be explained by random changes, especially in a variable disease like MS. It's also a problem that most of the studies were unblinded - in other words, the experimenters knew who they were looking at. This allows for bias and in fact, if you happen to have a vested interest in the results, like the neurologists who have invested years in the autoimmune theory, or the Zamboni group who are currently marketing the only machine capable of detecting the hard to find CCSVI (some conflict of interest there, methinks), bias comes in inevitably.
On the good side, the whole debate has increased interest in MS research. On the bad side, several people have, for some unknown reason, decided the current researchers are not capable of doing a proper study, and so have stopped sending money to the MS Society. Instead we should be sending more, and demanding unbiased studies, multisectorial, blinded, and large. We won't know for sure until we get those studies done. Until then, taking a stand is perhaps premature.

Study/date	Blinded?	Number of participants	results
The perfect crime? CCSVI not leaving a trace in MS. J Neurol Neurosurg Psychiatry. 2011 Feb 4. [Epub ahead of print] Mayer CA, Pfeilschifter W, Lorenz MW, et al	Yes ++	20 MS, 20 controls	No retrograde blood flow Conclusions This triple-blinded extra- and transcranial duplex sonographic assessment of cervical and cerebral veins does not provide supportive evidence for the presence of CCSVI in MS patients. The findings cast serious doubt on the concept of CCSVI in MS.
Chronic cerebrospinal venous insufficiency and iron deposition on susceptibility-weighted imaging in patients with multiple sclerosis: a pilot case-control studyInt Angiol. 2010 Apr;29(2):158-75. Zivadinov R, Schirda C, Dwyer MG, Haacke ME, Zamboni P et al	No	16 RRMS 8 controls	All 16 MS patients fulfilled the diagnosis of CCSVI (median VH=4), compared to none of the HC Iron concentration measures were related to longer disease duration and increased disability as measured by EDSS and MSFC, and to increased MRI lesion burden and decreased brain volume.
CSF dynamics and brain volume in multiple sclerosis are associated with extracranial venous flow anomalies: a pilot study. Zamboni P, Menegatti E, Weinstock-Guttman B, , Zivadinov R. et al Int Angiol. 2010 Apr;29(2):140-8.	No	16 MS 8 controls	Vascular Hemodynamic changes occur more frequently in MS patients than controls. Altered VH is associated with abnormal CSF flow dynamics and decreased brain volume.
No Evidence of Chronic Cerebrospinal Venous Insufficiency at Multiple Sclerosis Onset Claudio Baracchini, MD,1 Paola Perini, MD,1,2 Massimiliano Calabrese, MD,1,2 Francesco Causin, MD,3 Francesca Rinaldi, MD,1,2 and Paolo Gallo, MD, PhD1	No	50 MS 60 global amnesia 60 healthy.	Our findings do not support a cause-effect relationship between CCSVI and pMS. Further studies are warranted to clarify whether CCSVI is associated with later disease stages and characterizes the progressive forms of MS.
Intracranial venous pressure is normal in patients with multiple sclerosis. Meyer-Schwickerath R, Haug C, Hacker A, Fink F, Seidel D, Hartung HP, Haupts MR.	No	29 MS 28 Controls 19 patients with increased intracranial pressure	There is no evidence of an increased intracranial venous pressure in MS patients.
Cardiovasc Intervent Radiol. 2011 Feb;34(1):1-2. Epub 2010 Dec 7. Cardiovascular and Interventional Radiological Society of Europe commentary on the treatment of chronic cerebrospinal venous insufficiency. Reekers JA, Lee MJ, Belli AM, Barkhof F.	No	Comment only	Thus far, no trial data are available, and there is currently no randomized controlled trial (RCT) in proress Therefore, the basis for this new treatment rests on anecdotal evidence and successful testimonies by patients on the Internet. CIRSE believes that this is not a sound basis on which to offer a new treatment, which could have possible procedure-related complications, to an often desperate patient population. PMID: 21136256 [PubMed - in process]
Nervenarzt. 2010 Jun;81(6):740-6. ["Chronic cerebrospinal venous insufficiency" and multiple sclerosis: critical analysis and first observation in an unselected cohort of MS patients]. [Article in German] Krogias C, Schröder A, Wiendl H, Hohlfeld R, Gold R.	No	?	The "venous hypothesis" is analyzed and evaluated with regard to the following aspects: first concerning the validity of published data, second with regard to the plausibility in view of the currently approved pathogenetic model of MS, and third with regard to the compatibility with preliminary neurosonological findings in a small but unselected cohort of patients at our department.The authors conclude that the "chronic cerebrospinal venous insufficiency (CCSVI)" cannot represent the exclusive pathogenetic factor in the pathogenesis of MS. In our cohort, only 20% of the patients fulfilled the required neurosonological features of CCSVI. So far, the pathogenetic relevance of these findings remains speculative. Thus, based on the current scientific position we cannot justify invasive "therapeutic" approaches, especially if they are performed outside of clinical trials.
Normal CSF ferritin levels in MS suggest against etiologic role of chronic venous insufficiency. Worthington V, Killestein J, Eikelenboom MJ, Teunissen CE, Barkhof F, Polman CH, Uitdehaag BM, Petzold A. Neurology. 2010 Nov 2;75(18):1617-22. Epub 2010 Sep 29.	No	cross-sectional (n = 1,408) longitudinal (n = 29) patients with MS and a range of neurologic disorders.	Pathologic (>12 ng/mL) CSF ferritin levels were observed in 4% of the control patients (median 4 ng/mL), 91% of patients with superficial siderosis (75 ng/mL), 73% of patients with a subarachnoid hemorrhage (59 ng/mL), 10% of patients with relapsing-remitting MS (5 ng/mL), 11% of patients with primary progressive MS (6 ng/mL), 23% of patients with secondary progressive MS (5 ng/mL), and 23% of patients with meningoencephalitis (5 ng/mL). In MS, there was no significant change of CSF ferritin levels over the 3-year follow-up period. CONCLUSION: These data do not support an etiologic role for CCSVI-related parenchymal iron deposition
No cerebrocervical venous congestion in patients with multiple sclerosis. Doepp F, Paul F, Valdueza JM, Schmierer K, Schreiber SJ. Ann Neurol. 2010 Aug;68(2):173-83.	No	56 MS 20 Controls Sonography study, flow analysis, CCSVI criteria	Our results challenge the hypothesis that cerebral venous congestion plays a significant role in the pathogenesis of MS. Future studies should elucidate the difference between patients and healthy subjects in BVF regulation. No MS patient had >1 CCSVI criterion
Int Angiol. 2010 Apr;29(2):189-92. Chronic cerebro-spinal venous insufficiency: report of transcranial magnetic stimulation follow-up study in a patient with multiple sclerosis. Plasmati R, Pastorelli F, Fini N, Salvi F, Galeotti R, Zamboni P.	No	I patient	The demonstration of a modification of the cerebrovenous function with both clinical manifestation and via TMS suggests that the hampered cerebral venous return may contribute to the clinical course of MS.
Is chronic fatigue the symptom of venous insufficiency associated with multiple sclerosis? A longitudinal pilot study. Malagoni AM, Galeotti R, Menegatti E, Manfredini F, Basaglia N, Salvi F, Zamboni P. Int Angiol. 2010 Apr;29(2):176-82.	No.	31 fatigue testing 1, 6 and 12 mos post-procedure	The reestablishment of cerebral venous return dramatically reduced CF perception in a group of MS patients with associated CCSVI, suggesting that CF is likely the symptom of CCSVI. Note: Patients were identified as having CCSVI and Chronic Fatigue
Chronic cerebrospinal venous insufficiency and multiple sclerosis Omar Khan MD^1,*, Massimo Filippi MD², Mark S. Freedman MD³, et al ANN NEUROL 2010;67:286–290			In this Point of View, we discuss the recent investigations that led to the description of CCSVI as well as the conceptual and technical shortcomings that challenge the potential relationship of this phenomenon to MS. The need for conducting carefully designed and rigorously controlled studies to investigate CCVSI has been recognized by the scientific bodies engaged in MS research. At present, invasive and potentially dangerous endovascular procedures as therapy for patients with MS should be discouraged until such studies have been completed, analyzed, and debated in the scientific arena.
Venous and cerebrospinal fluid flow in multiple sclerosis: A case-control study . Peter Sundström MD, PhD^1,*, Anders Wåhlin MSc², Khalid et al	No	21 MS 20 control	We found no differences regarding internal jugular venous outflow, aqueductal cerebrospinal fluid flow, or the presence of internal jugular blood reflux. Three of 21 cases had internal jugular vein stenoses. In conclusion, we found no evidence confirming the suggested vascular multiple sclerosis hypothesis. ANN NEUROL 2010;68:255–259
Endovascular treatment for chronic cerebrospinal venous insufficiency: is the procedure safe? T Ludyga^, M Kazibudzki^, M Simka^, M Hartel, M wierad^, J Piegza^, P Latacz^, L Sedlak^* and M Tochowicz^*	No	564 procedures in 331 MS patients with CCSVI	The procedures appeared to be safe and well tolerated by thepatients, regardless of the actual impact of the endovasculartreatments for venous pathology on the clinical course of multiplesclerosis, which warrants long-term follow-up.
No association of abnormal cranial venous drainage with multiple sclerosis: a magnetic resonance venography and flow-quantification study Mike P Wattjes¹, Bob W van Oosten², Wolter L de Graaf¹, Alexandra Seewann², et al	Yes	20 MS, 20 control MRV studies (magnetic resonance venography)	A completely normal venous anatomy was observed in 10 MS patients and 12 controls. Anomalies of the venous system (venous stenosis/occlusions) were found in 10 MS patients and eight healthy controls. An anomalous venous system in combination with associated alternative venous drainage was observed in six MS patients and five healthy controls. Flow quantification showed no venous backflow in any MS patient or control. Conclusions Findings suggestive of anomalies of the cranial venous outflow anatomy were frequently observed in both MS patients and healthy controls. Given the normal intracranial venous flow quantification results, it is likely that these findings reflect anatomical variants of venous drainage rather than clinically relevant venous outflow obstructions.
Iron and Neurodegeneration in Multiple Sclerosis Michael Khalil,1, 2 Charlotte Teunissen,2 and Christian Langkammer1 Multiple Sclerosis International Volume 2011, Article ID 606807,			In summary, increased iron deposition has been consistently reported to occur in MS, but its role in pathogenetic processes of this disease has not yet been completely clarified. Quantitative MRI and histopathologic analyses of postmortem MS brains should complement these [9] studies.

Well, it's one of those days...

2011-02-25T10:47:00.000-05:00

Got up, poured my cereal in my coffee mug.
It's gone downhill from there.
I'm trying to get organized for my move to ~~heaven~~ Nova Scotia (specifically, Dartmouth) and my brain is NOT cooperating. I am mixed up between trying to organize paperwork, throw out items, book movers, change addresses, etc., etc. and my desk is a disaster, my hair is a spectacle, and my dog is becoming surly. It's just about time to take him for a walk and mail a variety of things, but first I have to figure out the byzantine rules for getting money back from the drug support program here in Ontario for my horrendously expensive Copaxone. And other drugs.

Expensive disease, this. And it's only beginning. The pharmacist figures out I spent $16,000 on meds last year - most of it covered by insurance, thank gods, but this year my coverage stops at $2400 (the max available under my insurance). Even the support program only pays for 80%. As my income is about twice my drug total, life is looking a bit grim. Perhaps I will have to just give them up. Or maybe the makers of Copaxone, Teva pharmaceuticals, who were in fact fined for overcharging, could lower their prices a wee bit. I know, overall, it is less costly than the alternative - crippling disease progression - and it seems to have stopped that for me. I know it's expensive to make, and involves years of research - I know they have to charge a hefty fee. But perhaps a wee bit less hefty would be a big help.

Malingering and MS

2011-02-05T09:43:00.000-05:00

Okay, you've all heard it. About how MSers fake their symptoms so they can be accepted into trials. About how neurologists have to judge the story and see if they believe it before treating. About how MSers demand more more more all the time and insist on treatment even when their symptoms don't warrant it.
No?
Well I have heard this from three sources in the past two weeks (two live, one on Memorex), and I don't know quite how to react.
Burning down my neuro's office seems extreme.
Yelling in the privacy of my own home seems ineffectual.
Slapping the person who implied I was malingering is chargable.
So I'm settling for the middle road and writing here.

Okay, I'm mad.
Hmm.

So, you get told you have a chronic incurable debilitating disease. You are told you have to take expensive medications for the rest of your life or risk crippling disability. You are told you have lesions and holes in your brain.

Some of us wallow in self-pity. I did that, for about a year. I figure that's pretty normal. But once I bonded on the idea of a walk in tub, I was fine, really. For the most part, though I can't help grieving some of my losses.
("of all the things I've lost, I miss my mind the most...")

It's hard to be cheerful all the time when you have muscle spasms and numbness and forget where anything is and can no longer do simple math without thinking really hard and have to leave work because few employers would put up with a 2 hour nap every afternoon. But wotthehell, Archie, toujours gai, as Mehitabel the cat would say.

So, if you're me, you give your head a shake and start exercising. You exercise every day. You ignore the fact that this means the rest of the day is a writeoff because you know that if you don't exercise, your balance gets worse, your muscles atrophy, you feel more pain, you get fat(ter). Exercising means that your muscles are capable of walking the dog.

Exercising means that you still can walk, even if some days it takes more concentration than it really should and your feet cramp up afterwards and you notice that that old left leg just isn't swinging forward the way it should. But you plunge on and you do your best because you are fighting the disability, damn it, with all the energy you've got.
BUT you're still numb, you can't see properly, you can kiss sexuality goodbye, you still walk like a drunk when tired and a certain amount of your zest for living vanishes along with your energy.

And then you interact with your doctor.
And he treats you like those things, those smallish things that exist and ruin your life, those smallish things that shine most bright because of all your hard work stretching and moving and exercising even when you are beyond tired and your positive thinking and sense of humour about not being able to feel your lips or having them tango dance every time you go to the dentist - those things that still bother you - he treats them as if they are nothing, as if you should be grateful, as if you are wasting his time.

And in a way, you are. There's nothing that can be done for you in any case. Well, except more drugs. Which cost more money. And have side effects and dubious efficacy.

And then there's the support you need to maintain your status as disabled, that status that means you get an income even though you are too tired to work for one, even though, as an employee, you'd be pretty damn unreliable. And that he holds over your head like a sword of Damocles, in his might, swinging it to and fro, to and fro.

It's no wonder people with MS are telling the tales of their worst days, not their best. Minimize your symptoms at your peril, lest your funding be removed. Minimize your pain, or forget those nights when you couldn't sleep because of spasms, and you get scorn.

It's no wonder people hop on the comet trails of every possible treatment that doesn't involve their neurologist, even if the hope is as ephemeral as those trails, just to avoid that scorn, that feeling of being examined and found wanting as a person and a patient. I'm sure half of the benefits found through CCSVI treatment come from someone listening to the patient, and showing some caring.

I've lived with ongoing pain most of my life. It's from a variety of causes, probably not all MS, but I've lived with it and dealt with it and moved on. I resent like hell being told I malinger, when I ignored the symptoms of MS until I went blind one day (thank heavens, for a short time only) so that I wouldn't bother the medical establishment. I ignored the symptoms of a kidney stone and coped on my own with it so I wouldn't have to go to emergency. If I am saying now that I CAN'T DO IT, then by god, I CAN'T DO IT.

I am reminded of my favourite patient when I was teaching nurses. They were going to give her a bath and they had placed her in a bath chair to raise her up and into a huge tub. She was stark naked, up about five feet in the air, and she was hollering, "Come here! Come here so I can kick you!"

I feel as powerless as she was, and just about as mad.

Party, recovery, party, recovery

2011-01-31T12:41:00.000-05:00

google.stb.csi.stTbn()

If only they were balanced!
This weekend I was lucky enough to have my favourite sister and her friend come to visit Ottawa - they arrived on Friday night and left Sunday morning. On Saturday, we were wildly busy - dawdled over breakfast, heading down for a skate on the canal (and I could skate, except for that left hip flexor action...) - they went far, I went for a goodly bit. The canal was glorious and the weather cool, not cold. It was a perfect skating day. Then we came home, walked the dog, saw a movie, ate good pizza.
It was glorious fun.
After they left on Sunday, I fell onto the sofa and slept from 11-5. I woke up briefly, took the dog out for a pee, came back, in bed by 10, slept til 9:30 this morning and am ready to sleep now at noon. It will probably take me a week to get over that one day, as my feet ache with unexpressed spasms, my eyes twitch, my body hall surfs from one side to the other.
It was all so worth it, but I would wish for quicker recovery.
I live online, ordering things for delivery, since I know that walking around in a shopping centre exhausts me. And this despite exercise daily. And gallons of high test coffee and tea.
Sleep, wonderful sleep, beckons....

Women, men, disability, and surprises

2011-01-23T14:23:00.000-05:00

I'm in a strange frame of mind today. After 5 years of separation and 2 years of MS, I decided to ask my ex for spousal support.
It wasn't a decision made easily. I hate being dependent. It's in fact, one of my problems, and the reason why (if there are reasons why) MS was given to me. I need to learn to let others help me. But oh how I hate it!
So I approached my ex with the request to discuss this and waited for him to cry poverty or get riled up or anything - but he responded instead with care and support. It was astonishing. I've been afraid to ask him about this since I was diagnosed, knowing how we used to argue over money - or rather, not argue, just avoid discussion.
If this being supportive thing doesn't stop, from him and others, I am going to have to seriously change my world view. I've always felt I had to fight my way through things. Admitting weakness meant instant loss, I thought, maybe from some experience in my youth, maybe just from my hard-wiring.
But I am astonished regularly these days by the support I get around the MS thang, around my challenges and my successes. It's quite wonderfully heartwarming and it might just be beginning to thaw the ice walls I keep around my heart to avoid hurt.

It's the first time in my life that I've felt that I am cupped in caring hands. Thank you, thank you.

Now, now that I can feel that, perhaps I can extend that to others more readily. For the last little while, it's been hard to extend a loving hand, feeling that - hey! - no one helps ME! Giving begets giving.

So here's a big hug to all of you out there, and so many thanks.

Photo credit:http://www.myspace.com/_avada_kedavra_

More about CCSVI, from a thoughtful voice.

2010-12-31T13:53:00.000-05:00

http://vimeo.com/17889703
Kidnapped from Marc's site, the Wheelchair Kamikaze http://www.wheelchairkamikaze.com/

This doc explains a great deal about the science and lack of science still existing around the CCSVI thing. He does say venoplasty is very safe (stents ARE NOT), but he doesn't address any problems caused by repeated venoplasties. he also explains some of the structural difficulties in diagnosing CCSVI as versus regular venous functioning. It's well worth a listen.

For my money, I still don't understand the why. When the doc here says he has no evidence that the stenosis is correctly diagnosed and there is further, no evidence that it has any relationship to brain disease, why does he then say it's okay to do it?

My older brother is a gastroenterologist. When he joined his new practice, he was reprimanded for not using the fancy diagnostic machines as much as they had budgeted him to do - he deals with children and prefers to be as non-invasive as possible. But his partners weren't happy, because in order to pay for the fancy machines, they had to thrust x number of patients through it. I can't help but feel suspicious that some of the eagerness in for profit centres to do this procedure has to do with this pushing to use expensive machinery. A good bunch of we MS patients, demanding treatment, must make these places sing with joy and order a new set of post-its. (I worked in the non-profit sector and lemme tell you, a new order of post-its, even the cheapie copies, meant there was excess money in the budget - otherwise we reused photocopied paper, torn in fourths).

I keep hear the phrase, follow the money.....yep, the drug companies have had a healthy chunk of it up til now, and you bet the other sectors of the health care system would sure love to have a handle on a source of money such as we provide. Especially if we have to be re-plunged frequently! Wahoo! and get those Jaguar keys, Macie, we're going for a ride....

Sorry. End of year cynicism. It'll pass. Til then, Happy New Year All, and Never ever get a stent in your neck veins, okay? It's dangerous.

"Well, it looks like you've just gotta live with it...."

2010-12-16T20:35:00.000-05:00

Isn't getting older grand?

The thing with having MS is that you never know if a new crazy thing going on with your body is a transient (with luck) sign of your MS, or if there is something else wrong ticking away in your body. After all, a ms body is, as we say in the fiction game, an "unreliable narrator". It makes one feel a bit of a neurotic.

I remember being in agonizing pain for several months, thinking it was just fibromyalgia, only to find I was suffering from bursitis in my hips and a torn rotator cuff. I mean, really. One night a few months ago, I had agonizing pain down one side and thought it was a muscle spasm, hopping in and out of the bath several times to relax the muscle and wondering why it wasn't working. Well, it was a kidney stone, so no wonder.

Now I have lucked into an excellent nurse practitioner who actually believes in preventive health care. She has sent me for various tests and picked up all sorts of interesting things, none of which are acute enough yet for the people she refers me to to find interesting. So I am in the bizarre situation of waiting to get worse.

Which is pretty funny when you pair it with the MS thing of "going to get worse". So I am under observation for my kidney stones to see if they grow any bigger, am waiting for the gallbladder attack to demand removal of my gallstones, and now just returned from a rehab doc who looked at my knees (and my insurance) and said, "hmm. Well, they don't look too bad - even if you can't walk on them reliably. So let's just leave them, shall we?"

And she explained that the reason my knees were malfunctioning was that my hips were weak. This after months and months of squats and exercises of the hip variety.
So I suppose this is where the rubber of my body hits the road of the MS. I remember early on going to a physiotherapist because one leg remained weak despite exercise. I guess the exercises are helping me stay relatively okay but not really improving much.

I just wish, sometimes, that someone out there would say to me, just once, "Well, I've got JUST the thing for that. Let me go get it and in a few minutes you'll feel as good as new!"
No wonder people are flocking to CCSVI despite the dearth of positive results and the gradually accumulating negative outcomes. We're just so tired of hearing, "Well, it looks like you're going to have to just live with it."

Unfortunately (and here I would like to add "Merde alors! piss piss piss!" as I do in situations that are fraught with disaster), I think they may be right, and we will just have to adjust to our bodies gradually getting worse every day, until they become bad enough that they become interesting.

And hope that we stay boring for just a wee while longer.....

MS Society of Canada's web presentation of What's New, What's next

2010-12-15T12:42:00.000-05:00

Includes a very serious discussion of CCSVI as well as other treatments and gaps in the research.
Sensible discussion, I think.
http://mssociety.ca/en/help/education_nes.htm#video

New MS treatment needs study

2010-12-14T11:56:00.000-05:00

New MS treatment needs study

Amen, people. Stop the madness.

Well, I'm not happy.

2010-12-09T19:31:00.000-05:00

Yep, the Mad Sow is positively flipping. Went for a recheck of my eyes and their visual fields today and my lovely opthamologist is sending my report to my neurologist, intimating that things are not better and are, in fact, worse. Mind you, optic neuritis, from what I read, gets gradually worse over a period of days to weeks. Then it can resolve itself, or, alternatively, result in permanent vision loss. Lovely.
Way back when I first got diagnosed with this disease, I bargained with God. Okay, I said, I can cope with the physical things (some of them - I really wasn't hoping for incontinence and such) - but leave me my mind. So when the cognitive/emotional things took over, I was a bit miffed. Now I'm bargaining again - listen, I know I can never find my car, or add up my bills and I over tip to extremes because figuring out 15% is just too hard - but you KNOW I love reading and writing and I kindof need to be able to see for those things.
And then parts of my vision wander off. God only knows where they've gone. The eye doc thinks it is all quite mild right now, for which I am totally grateful. However, I'm wary. And oh so tired, fatigue being the other major sign of this particular flare-up.
I'm not happy. The whole shootin' match has joined in, making my left eye unable to hold position for the test (the vision loss is in my right) and my legs are twitching to beat the band. and if I didn't have a puppy to tend to, I'd be sleeping all the time. Blah blah blah.
But enough whining.
Things can only get worse, so I may as well enjoy what I have now. I'm off to read a book. While I can.

Doctor my eyes have seen the years

2010-12-01T21:01:00.000-05:00

and the slow parade of fears without crying
now I want to understand....

Today I finally bent and took my eyes to be checked at the eye doc's place - they've been giving me a bit of grief lately, giving me needle sharp pains at times, followed by blurring. Especially my right eye. I know I've given up on doing close work even with my glasses on, as I can never rely on the darn things to focus when I want them to.

http://www.nlm.nih.gov/medlineplus/ency/imagepages/1143.htm

So I got my visual fields tested and discovered I have a slight and somewhat scattered loss in my right eye. Eeeeeks.
Can I just mention this possibility of vision loss scares me most of all?

Ah well, perhaps it's just a flare-up. Or maybe I just have dry eyes and it is all just fatigue from the testing. I go back for a retest next week, and I'm hoping all is better and I just wasn't paying attention. Please. Please?

Doctor my eyes
Tell me what's wrong
Was I unwise
To leave them open for so long...
http"//www.youtube.com/watch?v=pCTYxIsLThA

Walking is hard!

2010-11-30T11:54:00.000-05:00

I feel a bit like those awful Barbie dolls that used to be sold some years ago that would say, when squeezed, "Math is hard!" I can empathize with Barbie, with her spastic always pointed feet and her knees that bend improperly, her fixed hands. My body is a bit that way today, as the flare-up I've been having for the past week adds to the foolhardiness of walking all over the place when visiting my son - it was a lovely tour of Waterloo but I foolishly left my cane at home and had to buy a new one halfway through the day.
So we wandered on, and I got such a good feeling about wonderful Waterloo - I finally saw it as my son sees it - accessible, filled with easy transit connections, charming shops and restaurants, pleasant people, pretty sights. At least until my hip started giving out.
Today, I have a puppy who has spent the weekend in a kennel and returns expecting fun fun fun and a body that wants sleep sleep sleep, preferably lying flat without a young pup slobbering all over me. Perhaps I can persuade him for later in the day...Meanwhile, I dragged myself out for a walk before the expected rain starts. Chutney the poodle kept looking back at me, waiting for me to speed up to my usual pace....but it was all I could do to put one leg ahead of the other. And now, typing seems beyond me.
I keep reading about these people who are desperate for CCSVI treatment who have fewer symptoms than I do. I don't understand the urgency. Sure, life is grim sometimes, like today, but rest and self-care often improves things and I feel somewhat better. I'd still rather wait and see what comes of the research. All of it, including the research into other areas...

Mouse Cortex Array Tomography Journey

2010-11-19T10:17:00.000-05:00

This gives me pause, for wonder, for thought, for admiration. How complex the brain of a mouse. How marvellous. And how inscrutable. I can't help but wonder at the work of neurologists and neuroscientists who try to plumb and understand these depths.

I read about people fearing that we will soon have implants that read our thoughts and act on them - it seems impossible, with so many different connections and pathways to analyze, that anyone can design such a system for more than one person - it would have to be so finely tuned.

We still don't understand the effect of antidepressants or the impact of the meds we take for our MS, and sometimes it just seems unreasonable that we shouldn't understand these things, until you see something like this, and realize it's a bit like understanding the universe, or the effect of atoms and nanoparticles and black holes and iron deposits and inflammation and anger and love and chocolate.

It's astonishing that we have come so far. A credit to that complex, intense thing, our brain.

It's Walking (and fundraising) time

2010-11-11T15:32:00.000-05:00

I can walk and carry a bone, too!

The ever cute puppy Chutney and I are setting a goal to make it through the MS Walk next spring. It's May 1st in Ottawa, and if I organize myself to move out East, that will be my last month in the Capital for awhile.
Last year I couldn't walk the 5 km. Last year I could barely stand for the event - I participated as a volunteer and then collapsed for two weeks. Since then, though, I've made a commitment to myself to exercise regularly - daily. I've worked my way through the Wii Fit and the Wii EA Active and Active more and am eagerly waiting for the EA Active 2. The puppy, a tiny toy poodle, requires regular walking to forestall house destruction and keep him understanding who is boss. So twice a day we head out for a walk - sometimes long, like in the mornings when I have energy or short, like in the afternoons when I do not. We're gradually building endurance, the two of us.
I'm doing the fundraising part of the walk because I know how much we need the support the MS Society gives those with MS and their families. I've been honoured to be on their Board this past year, and have seen how hard everyone works, how they do whatever they can to help those that need it, how they take cuts in everything to ensure there's enough money for research and client services. They're an amazing group.
I've also seen people much farther along the MS pathway than I am. It's heartbreaking. That said, these folks are fun and lively and good company and generally speaking, astonishingly positive. But life in a wheelchair just can't be as much fun as they make it seem.
So, I'm putting out an ask, as they say in executive speak these days -
1. I'd love it if you would join my team of walkers (things are much more fun in bunches), and 2. if you can't do that, I'd love it if you would sponsor me. It would really help me work toward my goal of being able to walk the 5 km - and maybe after that, the Camino.
Every little bit helps. You can sponsor me online at:http://msofs.mssociety.ca/2011WALK/Sponsor.aspx?&PID=1243034&L=2

Thanks so much!

The global view

2010-11-09T16:48:00.000-05:00

I've always prided myself on my ability to scan information and grasp the big picture - like a hawk circling on high, I always seemed to be able to see patterns and goals and obstacles clearly.
This just isn't working any more for me.
It's come on slowly, sneakily. First, I've lost the ability to read medical studies and grasp them without several go-overs. Now I find it harder and harder to see patterns in Scrabble or to figure out spatial problems or see things in a holistic way. Driving becomes a series of small steps, trying to organize my finances slips away. It's not that I'm becoming senile or anything, I think. I just seem to have a bit of a traffic snarl in the part of my brain that follows patterns through.
On the good side, I forget stories that I've read almost immediately, so I can reread them again and again. On the bad side, I have 40 packages of spaghetti in my cupboard. I know I should make a list. But that's admitting there's a problem.
I find it frustrating to be losing my analytical ability, my big picture thinking, my sense of global understanding. Of course, maybe I was just fooling myself that I had those abilities, but my degrees say no...
Practically speaking, maybe it means I should concentrate on short stories instead of novels for writing, focus on simpler tasks, do brain training, keep up with the exercise. All I know is that the thought of ever having to manage a workday again seems impossible. How would I keep track of all the things I had to do?
Oh, and also on the positive side, my wobblies are back, so I have the advantage of looking vaguely drunk if I don't concentrate on walking. Saves on actually having to buy the booze!

The creeping terror

2010-11-05T17:41:00.000-04:00

Ah yes, well, I do like to be dramatic.
So here I've been, feeling vaguely well for the last while, exercising madly, almost able to walk without occasioning some disturbance in my motor core. But the evil MS doesn't sleep. It's still there, and as soon as I put pressure on myself, it slithers out around the edges and does little things to me, like making my right toe drop just for the heck of it, or making my balance wonky all of a sudden so if I turn about I risk falling, or stopping my brain from chugging along appropriately. My typing degrades. My ability to make decisions slips ever squidgewards. I make up silly words....

Marc, the infamous Wheelchair Kamikaze, pointed out the slithery dread in his blog today in talking about why there seems to be such a split between neuros and MS patients regarding CCSVI. The thing is, all the stuff they offer us just delays the inevitable. Our brains remain twitchy, swollen, and the MS continues to kill off the myelin or astrocytes or whatever they are figuring out now, even when we appear fine. I have a good friend who has pointed out several times that we none of us know our fate, and tis true I may be run over by a bus tomorrow - but the difference is, we do know what our future MIGHT be, and it causes fretfulness. We would prefer a cure, thanks.

Every time I feel my body slipping, I can feel that dread. I can usually compartmentalize it, promise myself that I will worry about it tomorrow, so needn't do so today, but when I head to bed and notice that, despite the medication I am on that used to work to stop my leg spasms, they have returned - well, it's scary.

Or when I go to an event and see people with MS much further along than I am - it's hard not to put myself in that wheelchair, imagining how I might cope, wondering how they find the strength to do it.

Then I shake myself and tell myself that really this just means I should squeeze joy out of whatever fit days I have left, and find extra joy in wherever I need. It's true, but it's not always easy. Pollyanna-ishness is tiring.

It makes me want to punch things.

Wheelchair Kamikaze's excellent review of CCSVI

2010-10-30T15:22:00.002-04:00

As always, on the target. I'd write a follow-up but he's way ahead of me here and I can't say it any better.
Marc:
http://www.wheelchairkamikaze.com/2010/10/comprehensive-roundup-of-ccsvi-info.html

Hope vs. despair

2010-10-05T21:24:00.000-04:00

I've decided to get a puppy. My family members probably think I'm mad. After all, I had a perfectly wonderful dog, Dudley the magnificent (in the photo) who I loved to bits, and I sent him away to live with another family shortly after my diagnosis. The thing was, I was fully prepared to be crippled and in a wheelchair after a year and didn't want to subject a poor wee doggums to the boring life that would mean. Dudley went off to a family of five, with three cheerful little girls who promptly dressed him up in doll dresses and hats and who he went to happily, used to the pell mell of a herd of Bichons in his parental home. My quiet little place must've bored the poor fellow, so I'm glad he's put his paws down in a place where he will be loved to excess. (and which has a fenced yard!)

I have cycled through pets, looking for companionship in a container I could manage. I have my ferocious parrotlet, Dora, who tries to run my life and who lives a very spoiled existence indeed. She's sweet and bossy and prefers me to any other landing surface which is adorable. But she's not quite enough.
This puppy is a vote of confidence - in me, in my ability to deal with this disease, in my ability to live alone and succeed at it. He's sweet and roly poly and all that, but his genes are smart, and I know if I work at it I can train him to be a great companion animal. He will make me walk even when I don't really feel like it, he will make me laugh also. I need this, more than I can admit. Living alone with an unpredictable chronic disease is lonely at times. It's not that I want a person around, though, necessarily, though I like that. Sometimes I just need a mute companion who will live and breathe around me and care for me.
I do hate the unpredictableness of this disease and wonder about taking on a new responsibility - but then I have hope that the progress will be slow, that I will have time to truly enjoy my new little buddy, exploring new places through dog's eyes. I have hope.

Today I awoke...

2010-09-28T11:17:00.001-04:00

to dreams of spasms. I'd been watching a tennis match with friends and family and we were sitting at a picnic table, when suddenly my legs spasmed up and arched over the table as I stood, seeking escape. I ended up having to crawl away, while my vision greyed over and eventually I was blinded.
I remember calling to my mother, "Can we just please go home?"

It was the kind of dream that sticks with a person. The kind that makes your body twitch even when you don't want it to, the kind that sends your mind into unhappy areas, thinking of this disease and what it is doing within your brain, undetected.

There's yet another new theory about MS - that the problem isn't death of myelin, but instead, activation of astrocytes, the little cells that make and repair everything to do with nerve cells. If they go rogue, bad things follow.
Ah well. I should feel reassured that as the stem cell and other research goes ahead, we are coming closer to an answer to this disease. I can only hope we figure out prevention soon - I have kids, and my biggest fear is that they will be visited by MS themselves.

But the more I hear, the more I realize this is a very complex entity we're dealing with here. And I just really wish it would stay out of my dreams.

http://www.nature.com/neuro/journal/v7/n10/fig_tab/nn1004-1021_F1.html

Blaming and hating

2010-09-23T17:13:00.000-04:00

There's so much anger out there about the CCSVI thing. It makes me weary. I mean, heck, we're a pretty unlucky gang, we MSers, and we should be standing together, rather than trying to decimate each other. It reminds me of the battles between stay at home mothers and working mothers, where both sides just hurl invective at each other (and men) without ever acknowledging the right things about the opposing side.

It's exhausting.

I find it most frustrating when the MS Society gets attacked. These are the same people who get people wheelchairs if they need them, find walkers and canes if necessary, look into housing issues and legal issues ( or at least refer you to someone who can help) and yes, fund research. And yet all of a sudden they are the great satan and do nothing but evil. I can't agree with that viewpoint. In fact, it seems like ingratitude of the highest order.

I know our MS branch is working so very hard to raise the money needed for client services, ongoing classes, research, education and awareness. The small group of staff are everywhere, totally dedicated, working many hours overtime to fill in for volunteers who couldn't make it, to help make events a success. There are many many volunteers who help with their work, many of whom feel disenfranchised by the anger directed at the society. All in all, this hatefulness is not going to get us anywhere. Except maybe the MS Society won't be able to help those folks who really need their support. Do we want that?

Research is ongoing into CCSVI. Fortunately (I believe it is not going to be a cure-all), research is also ongoing in several other areas. This is a complex disease. A study (http://www.eurekalert.org/pub_releases/2010-09/cp-isp091610.php) today reported that the immune attack on neurons doesn't just attack the myelin - it attacks the cells themselves and changes the calcium balance. It's preliminary, but it just adds to the messiness around this disease and the very real challenge in treating something that is so different for each person.

I wish we could concentrate on working positively instead of negatively. I wish neurologists wouldn't be so rude about it all. I wish they were cuddlier overall. Mine does not fill me with love, I gotta tell you. So it's understandable that people might get a bit angry at the neurologists. But hey - the neuros have their own problems. MS patients are notoriously well-informed and somewhat demanding. We can be a pain in the arse.
Maybe we need to just chill on both sides of this thing and admit we may both be wrong. Or right.

There's one thing I do know. The MS society folks and the neuros aren't hoping to keep us sick forever. That's just paranoia. There's plenty of work to go around.

Now the drug companies? Well, they love it when you have to take a medication forever. It's true. I'd love to force Teva to lower the price on Copaxone, which they've been ordered to do but have ignored up till now. I'd love it if we could all get off the statins everyone is being prescribed, or the antidepressants. I'd adore a national pharmacare program here in Canada. We have fill-ins, but they involve so much paperwork it's almost not worth the trouble. Almost. Except that I'm at $1800 a month for prescriptions alone (low estimate) and that could bankrupt a gal.

Dating and the Sow

2010-09-18T20:46:00.000-04:00

It's a challenge, this whole dating world and the Mad Sow. It isn't easy to not bring it up. I'm rather young to be retired, I obviously don't go to work, and I look relatively fine. Questions arise. I've taken to telling people I'm a writer but I need some more publications if I am to sound persuasive about it all. Maybe I can just say I have an inheritance that doles me out a dribble of money each month?

But the question is always there - how bad is your illness? How bad is it going to get? If I fall in love with you, will I be saddled with a cripple? Harsh, but reality is many women with MS are left by their partners. And vice versa, though less frequently. Chronic disease is no picnic to think about. And though I deal mainly with crushing fatigue and numbness now, who knows what tomorrow may bring? I don't. My neurologist says my disease looks relatively quiet. That's nice and I'm grateful. The fact that I was diagnosed older than is common could be good or bad, depending on which study you read. I take my meds, I try to eat properly, I exercise madly when I can. I'm doing everything I can to keep well, but my brain might have different ideas.

But, let's be honest here. I'm over fifty. Almost everyone in my age group has at least one chronic disease. Many of them don't know they even have it. Many of them will die well before me of high blood pressure or stroke or diabetes or cancer. It's the idea of having MS that scares people - the image of wheelchairs and walkers and trembling limbs and spasms. Heck, that scares me, too.

The other diseases aren't as visibly disabling in people's minds. But as a nurse, I can see them. I can see the smoker, coughing, and visualize their lungs, see the COPD waiting ahead. I see people who don't exercise or who are scarfing down mallomars, and I know what they'll likely be told soon.

So I get slightly crusty when I'm quizzed about my MS. I'm good now, I tell people. I have no idea how I'm going to be tomorrow. And neither do you know how you will be. Let's just pretend we are all healthy and live the life we have, right now.

Crashing

2010-09-14T19:08:00.000-04:00

I feel like an ant who comes across an ant lion trap.
For the last few weeks I've been feeling fine. No real signs of the Mad Sow, exercising like a crazy thing, doing aerobics and strengthening and able to walk and hike and carry heavy things and balance and move and filled with energy and light. Carrying and toting and sending kids off with furniture and stuff I helped load into vans, helped take off vans. I am busy with my daily endeavours, running here and there and doing important ant-like activities. I'm cheerful, glowing, stimulated and stimulating.

Suddenly I notice the sands slipping around me. It becomes harder to exercise - my balance is off - I start to risk falling as I step into aerobics. I find volunteer things seem too difficult to continue with -my brain won't take on new information. I stop eating so healthily because it's too tiring to even think of food preparation. I get tireder.

Last night, needle sharp pains start in my eyes. I drive my car against the side of a building when I do a drive-through for coffee. I go out for lunch and am overwhelmed with the noise and chatter and can't quite make my head work properly. After lunch, I am entirely wiped out, stagger home and crash into bed, too exhausted to move, lying flat and unconscious for two full hours. Now I'm awake, but shivering like I have the flu. I am slipping down, like the ant in an ant lion den, grains of sand slipping under my feet.

Like the ant, I'm going to pretend the jaws aren't at the bottom of the hill. I'm going to keep scraping at the sand grains, hoping to pull myself out of the trap. I'm going to rest tonight, eat healthy things, look after myself with green tea and cuddly blankets and send myself back to bed early. And hope, hope, hope the edge of the pit is closer than it looks.

But there is something nasty waiting at the bottom of the pit.

I like the healthy ant me. I don't want the illness to take me again. I don't. I don't.

CCSVI on Science Based Medicine Blog

2010-08-11T16:58:00.002-04:00

Interesting discussion:

http://www.sciencebasedmedicine.org/?p=6465

Buff but bummed

2010-08-06T21:04:00.000-04:00

Okay, so I've been working out like crazy for a month now. I've earned praise from my automated coaches on Wii Active ("Keep this up and you'll be coaching ME soon!"), I am now familiar with the elliptical downstairs and have managed to get to three bars into the "weight loss" category - I've even developed considerable arm muscle mass and slimmed my legs. My blood sugars rock. My body moves without complaining too much and my balance has improved.
So why oh why am I spending the REST of my days in sleep or sluggish brain death? I should be getting peppier as I go, as I lose weight, gain muscle - but instead I slump and collapse after lunch, sleep for hours, wake for dinner, sleep more.

And worse, despite the muscles, lifting groceries is still so difficult. Doing housework seems beyond me.
I know my body is getting in shape, but something in it isn't getting the memo. Although I can see slight improvements to stamina, I'd expect more after 30-60 minutes of exercise almost every day for weeks.
All I can hope for is that with cooler weather, all this work will show. And nap to extremes now.

Nocebo, placebo, kissing...we need to know more!

2010-08-02T17:10:00.000-04:00

And so it starts. Some studies refuting Zamboni's claims: http://www.news-medical.net/news/20100802/Research-shows-no-link-among-CCSVI-and-development-of-multiple-sclerosis.aspx

Two small studies, and I'm sure those looking for a conspiracy will note that they were conducted by neurologists, but they are a start of a question around this issue.
Saskatchewan has decided for clinical trials of the venoplasty but I've noticed that guardrails are being placed around their statement as talk progresses. Still, I do hope we get some REAL evaluation of this procedure, not just anecdotal statements of hands feeling warmer or being slightly better for a while. I want longer follow-up, better testing, perhaps MRI changes.

One of the other interesting studies I read lately mentions how people with MS are more likely than those without to react negatively to placebos, to complain about side effects from sugar pills, etc. The "Nocebo" effect, as studied in this meta analysis review. http://msj.sagepub.com/content/16/7/816.abstract

We've always known that the placebo effect has a strong impact on study results; now it seems we react more both to positive and negative stimuli.

It's enough to make one feel like a hysteric or hypochondriac. But perhaps there is something important here that speaks to the damage our brains have undergone. Perhaps they are "twitchier" due to the irritation MS causes. Perhaps that's why we seem supersensitive, in good ways and bad.

It's hard to know. But it does make me suspicious of small studies that purport to find success. And it speaks to the need for larger studies, repetition of results, before we can wave the flag of success.

Another study, mentioned to me by a dear friend, speaks of tongue stimulation to increase the ability to walk. http://www.jsonline.com/features/health/54545577.html
Interesting stuff. Myself, I prefer my tongue stimulation when shared with another. I feel this study gives me the right to explore kissing with as many people as possible (or one as often as possible) as a MS treatment. And I don't care about any placebo effect....

But hey - in all the studies that show success in MS treatment, they also talk about physical therapy and exercise regimes to rebuild muscles. And yet no one seems to look at just exercise as a treatment for MS. Perhaps because there's no money in it?

to all those travelling for CCSVI and stem cell treatments

2010-07-26T10:39:00.000-04:00

Oh, how I wish you wouldn't. There are so many people just out making a buck off of you. It breaks my heart. And I know about desperation about MS, really. My own life has been destroyed.

Offshore Stem Cell Clinics Sell Hope, Not Science

by RICHARD KNOX

Dr. George Q. Daley sits at his keyboard and types "stem cell treatments." In less than a second he gets 13.4 million Google hits.

"Here's a website where they claim over 1,500 patients treated," says Daley, one of the world's foremost stem cell researchers. "That doesn't mean they've been treated successfully. It's 'buyer beware!'"

But consumers have a hard time sorting out all the stem cell claims out there. Websites often look professional and convincing. Typically they feature distinguished-looking white-coated doctors posed in front of bookcases, technicians holding up flasks with mysterious colored liquids, and happy, healthy-looking clients cavorting on beaches.

Often these clinics are based in the Caribbean, the Ukraine, China, South America. Sometimes it's impossible to tell just where they are; to contact them, you fill out an online form and they get back to you. The US-based websites typically send their clients offshore for treatment not approved by the US Food and Drug Administration.

EnlargeRichard Knox/NPR

Dr. George Daley is one of the world's leading stem cell researchers. He holds a file of letters from desperate people seeking stem cell cures. Daley warns patients not to fall for foreign stem cell clinics which sell unproven treatments at a high price.

False Promise

These days stem cell clinics offer cures for practically everything that ails humans – spinal cord injury, heart disease, multiple sclerosis, Parkinson's. "Everything from A to Z," Daley says.

Unfortunately, Daley says, stem cell therapy is effective for only a few blood disorders, such as leukemias and thalassemia.

"We do about 80 of these a year, and about half the time we can cure the patient," Daley says. "The problem is, if you have diabetes or Lou Gehrig's disease or Parkinson's, stem cell treatments are not the answer today. We hope they will be in the future. But they aren't today."

There are a growing number of legitimate human experiments with stem cells for disorders such as heart failure, spinal cord injury and neurological disease, both in the United States and abroad. Experts say these clinical trials should be labeled as experiments. And prospective volunteers should look for telltale safeguards, such as oversight by ethics boards and approval by governmental regulatory authorities.

Premature claims of stem-cell therapy success is driven by a certain magical aura surrounding stem cells. Under certain laboratory conditions these cells can turn into almost any type of tissue. They promise regeneration. To desperate patients with incurable disorders, that notion is irresistible.

(see the rest of the article by clicking the link)

Every once and awhile, this disease scares me...

2010-07-23T10:20:00.000-04:00

I know I've been lucky. Since my diagnosis two years ago, my progress has been slow, almost benign, except for the weeks of fatigue, the more than infrequent difficulty walking, the numbness in my nethers, the confusion.
Last weekend I went to a lovely picnic put on by the local Chapter of the MS Society as part of their student summer program. Almost everyone there was in wheelchairs or walking with tremendous difficulty. Some used tubes in their mouths to push the remotes on their wheelchairs. Many needed help eating. It was sobering.
Today, I dragged my somewhat unenthusiastic legs over to the gym to try a workout - (I am going to beat this diabetes thing to death if it kills me!) (and I want to keep my muscles in as good shape as possible) they were dragging a bit and I was wondering if I could do it - when I passed a woman who noticed my MS walk T-shirt and said "good for you!" and explained she had MS. She was in a power wheelchair with head support. When I told her I had MS, too, she said, "wow! You're lucky you are still walking!". I agreed...
Coming back from my workout I joined a man in the elevator who was carrying a gym bag, so I asked him if he was just coming back from the gym, too (as I sweated profusely beside him). He said, no, he was going later, and then he saw my T-shirt and jabbed me in the MS section of it, saying, "good for you! I know so many people who have MS - you know Dan, downstairs?" I shook my head no. He said "Well, he used to be okay, but he's in a wheelchair now..." I told him I had MS and he leaned forward, grabbed my sweaty head and planted a kiss on my cheek. "You poor thing," he said, "God bless you!"
I murmured something about "there are worse things..." and he said "No, this is bad enough. My partner is so ill and she's younger than I am..."
It's like I'm getting a message from the world and the gods that yes, I should be more grateful that I am almost okay (and I am profoundly grateful), and yet, that I shouldn't count on it persisting. Yikes.

Well, shoot.

2010-07-20T20:36:00.000-04:00

So here I am exercising like a mad fiend, enjoying feeling my body react like a healthy person's would, enjoying the freedom of being able to walk a bit without having to think about it....
Yeah, it's been hot, but I've tried to keep cool, well hydrated, reasonable about activity.
And then it hit me - today - the awful fatigue. It's been creeping up on me the last few days - I've been feeling more of the "nah, don't wanna"s and fewer of the "let's go!"s. I've been crashing asleep in mid sentence and snoring the whole night through. I've noticed a sluggishness in getting up the last two days.
But today - the wall. I dragged myself to my class this AM, worked blindly through it, came home, and too tired to eat, collapsed onto the sofa and slept the day away. I'm still exhausted, since the joy of the MS fatigue thing is that it doesn't get better even after sleep.
I'm frustrated. And fed up. And feeling that same old sense of loss that comes whenever I am reminded that things just don't work properly in my body anymore.
And I'm reminded about why I am not at work. This fatigue was a daily thing when I was working full-time. I was in a fog almost all the time, barely conscious, unable to remember what happened or went on, dragging myself from coffee to coffee to coffee to coffee. And when I'm so tired, I can't think straight. It's like I'm looking out through a tunnel - my vision blurs, my hearing seems less effective, I feel locked in to my interior.
It's a reminder, not a welcome one, but a reminder nonetheless. Life has changed forever.
Now to rest and heal and get myself back on track again....

What Causes MS? Or where do vaccines figure in all of this?

2010-07-19T20:22:00.000-04:00

Just reading a thread on the very helpful site, Patients Like Me, where I routinely go when I want to ask a question that my doc would look at me sideways for asking.
They've been there when I wondered about which treatment to take, when my legs started spasming and no one seemed to think it was a common thing with MS, when I lost sensation. They've been helpful, and they have additional sites for other diseases where fellow sufferers get together and share information. It's great to look up medications and see if others have been prescribed the same things, etc. Awesome resource.
However, it is filled with people who are desperate about MS and also somewhat uninformed. The latest post is filled with suppositions that vaccines caused their MS. Now, we don't know what causes MS, so I can't be SURE they are wrong, but research says it is probably a combination of things - from low vitamin D, to infection with Epstein-Barr disease (mono) after age 15, to stress, to a variety of other things from genetic tendencies to environmental pollution. Maybe vaccines do play a part, but I hate to read these posts.
Why? Because I'm a nurse, and I know what those vaccines prevent - diphtheria, where a thick membrane forms across your throat, disabling your ability to breathe; rubella, where infection during pregnancy results in a deaf, severely congenitally damaged child; polio, which leads to paralysis with first infection and often recurrent paralysis later in life; pertussis, which I've seen kill babies with exhaustion; tetanus, which paralyzes the lungs and can kill. They aren't minor diseases. We've become casual about them because they are now rare, thanks to immunization.
My son is travelling through Asia and caught amebic dysentery. He is taking pills to forestall worse infections: malaria, sepsis from any wounds, etc. But what is primarily protecting him are his immunizations, for hepatitis, yellow fever, etc etc etc. He is wandering safely through a literal morass of germs and creatures all hoping to feast on his remains. As am I, here in safer North America.

We have so many little bugs who are becoming resistant to antibiotics that immunizations are becoming even more important year by year. I take my flu shots. I need to get my tetanus updated (tetanus is in the soil and can getcha anytime - you need a booster every 10 years). I can't prevent my MS or my diabetes or whatever, but I can do what I can to keep myself from being felled from diseases for which we have the prevention available. Why wouldn't I?
I wish I could finger the blame for why I have MS. There isn't any in my family; I don't know why I have been so lucky. Inside myself I blame a bad case of mono in College and my second to last boss, who stressed me to breaking point. But I don't know. It doesn't really matter in the end for me, though I'd like to see the cause identified so it could be prevented for others.
But fear of vaccines has its own dangers...

Lawsy, how I DO hate the summer!

2010-07-15T10:46:00.000-04:00

I never thought I'd get to this, after a winter of grey and grey and suffusions of grey, but I hate summer.
I hate the relentless sun, the humidity that makes my sweat just lay on my skin with nowhere to go, the hot breezes, the sounds of lawnmowers and trimmers and motorcycles and wonky air conditioners. I crave shade and spring and fall and the kind of air that enlivens me rather than the heat that makes me lie about like a pole-axed sheep for most of the day.
The plants bug me. They are so untidy. The heat and humidity have caused them to grow all leggy and unattractive and only the weeds seem to be winning the battle for the sidewalk cracks.
I hate wearing clothing this time of year, and yet, it's expected. I hate seeing people who deny these expectations. Men, for example, who wander about shirtless. It pisses me off, me in my bra and shirt required by law (and, frankly, common decency, as an over 50 plump woman does need to shield somewhat). Mind you, over 50 fat men don't seem to feel the same requirement.
Every day with MS, the heat saps me more and more, to the point where I feel lucky if I want to do anything. My brain glides into neutral. Then reverse. Then it falls off the cliff.
I loll about. I read novels. I forget what I read. I drink water. I loll.
Making food seems unnecessary and unpleasant, so I live on grapes and slices of cheese.
I get impatient with the body and brain that seem to only want to lie about, but I'm trapped, pinned like a butterfly to a board. I force myself to exercise every morning, before my body gets the message, but crash into dead sleep at eight every evening. My feet are cramping more and more, legs twitching more, as the heat gradually shoves my MS buttons.
I long for those first few cool breezes of late August...

I want a new drug

2010-06-29T13:59:00.000-04:00

I want a new drug, yes I do.
Huey Lewis and the News
I want a new drug
One that won't spill
One that don't cost too much
Or come in a pill

I want a new drug
One that won't go away
One that won't keep me up all night
One that won't make me sleep all day

One of the most awful things about MS is the endless piles of pills that are prescribed to you to manage the symptoms. They cost all sorts of money, they interact with each other, causing more symptoms, they rob one system to manage another.
I've fought the drug thing as much as possible and even resent taking the ones that are supposed to be managing my disease (the endlessly expensive Copaxone)
Lately, though, I've found a new drug, one that I had forgotten about.
My symptoms are relatively quiescent at the moment, so I'm doing the exercise thing, and I tell you, if you can force yourself past that 10-15 minute barrier and break out in a sweat, those endorphins are fabulous. I could become an addict, easy. Today I was singing along as I gasped through 30 minutes on the elliptical trainer - at least until someone else came in. Sweating like anything, no glowing for this gal. It was wonderful, joyful, painful....;-)
I'm trying to be careful, keeping cool, trying to keep my fluids up - but once I start it is so hard to stop....
Love it.

Clinical Trial Testing New Multiple Sclerosis Treatment to Launch in Buffalo

2010-06-28T16:36:00.001-04:00

Clinical Trial Testing New Multiple Sclerosis Treatment to Launch in Buffalo

Looks like a good study protocol. Hope it shows us something of help!

Myelin repairing itself - wahoo!

2010-06-28T10:29:00.000-04:00

Protein Helps Mitigate the Effects of Multiple Sclerosis

As well as the marks of other conditions

By Tudor Vieru, Science Editor

June 8th, 2010, 12:42 GMT

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A group of American investigators from the Washington University School of Medicine (WUSM) has recently developed a new approach to mitigating the devastating effects diseases like multiple sclerosis leave behind in the brain of patients. The science team says that a protein involved in building the cortex of children and infants could have its action hijacked, and then used to restore the mature brain to its former potential. The finding could have significant implications for a large number of people suffering from MS and other neurodegenerative conditions, the experts say.

The disease appears when myelin, the protective layer that ensures the insulation of nerve cells, is disrupted. This causes the electrical signals traveling between neurons to lose their intensity, and become scrambled. “In MS patients, myelin repair occurs inconsistently for reasons that aren't clear. Understanding the nature of that problem is a priority because when myelin isn't repaired, the chances that an MS flare-up will inflict lasting harm seem to increase,” explains WUSM associate professor of medicine and of neurobiology Robyn Klein, MD, PhD. The scientist is also the senior author of the new investigation, which is detailed in the latest online issue of the esteemed journal Proceedings of the National Academy of Sciences (PNAS).

The WUSM team conducted its recent study on a batch of unsuspecting lab mice, which were genetically modified to act as a model for multiple sclerosis. It was discovered that a protein known as CXCR is directly responsible for fixing the myelin sheet covering the neurons. The finding was made possible by the fact that the group did not use a standard MS model for the research. In past works, the actions the brain took in repairing itself were obscured by the response of the immune system. The problem was circumvented through the use of the drug cuprizone, which promotes the death of myelin-forming cells in the mouse brain.

The results were “a surprise, because the main thing CXCR4 has been known for is its role in forming the brain, not healing the brain. But we did know that injury increases the number of brain cells that make CXCR4, so it wasn't an unreasonable place to look,” Klein explains. “We do not yet know if this myelin repair pathway is somehow damaged or impaired in MS patients. But I like the idea of turning on something that the brain already knows how to make by itself, allowing it to heal itself with its own molecules,” the expert adds. The WUSM team is now about to begin a new set of investigations, in which they will look at this protein, its actions, and its potential for a new drug in deeper detail.

Oh the joys of being able to move!

2010-06-23T13:25:00.000-04:00

I feel bipolar. On the days when my MS body won't cooperate, I am grouchy, depressed, hostile, unmotivated.
On the days when it works, the sun comes out and I spring about, filled with the energy of muscles screaming to break free. For the last three days I've managed a 30-45 minute aerobic workout, loving every minute. I even did the deadly Wii Active today (sure, just the easy low impact one, but still!), breaking into a sweat so prodigious I daren't be seen for at least a half hour or so til it all stops pouring out of me. I can feel my tummy getting tighter, and it fills me with joy. And my legs remain strong, my balance is good (until after the exercise, when I develop a listing to one side like a sailboat tacking upwind). My lungs feel open and exercised and aerated, my brain is functioning better, it's all wonderful. And I feel less like smoting anyone who annoys me...
I get done with my workout and immediately start thinking of doing another, my mind and heart willing, my muscles and nerves ever so affirmatively NOT. But I try and work in a walk as well later in the day, just because I can, and there are all those days when I can't that my muscles have to make up for.
And then, at night, when I crawl into bed, the pain starts - the muscle spasms, the contractions, the hip flicks. I try not to whimper, but it hurts, damn it, especially when my back flips my legs and they are pooped from the day. Fortunately, I am usually so tired that I fall asleep before too much whimpering ensues, but I'd sure as heck like to know why the spasming starts when I am at rest. And maybe how to forestall it. Maybe I'll find out when I see my neuro on Friday....

Meanwhile, I'm riding this active horse for as long as my body will let me. It feels so GOOD! And I can't help but think, if I exercise now while I can, maybe I'll get a grip on all those other monsters that have come to live with me - overweight, diabetes, high blood pressure...of course, the main problem is that when I exercise, I get very very hungry....;-)

Help Mii!

2010-06-19T12:26:00.000-04:00

Ah Mii.
Any of you who read this blog know I love my Wii Fit. It's perfect for we wobblies, as it helps balance us, and adjust its expectations day by day so we need not die from over exercise....

But I've got some issues. First of all, I created my Mii, designing it short and round, only to get on the board and have it readjust me shorter and rounder. It's harsh.

I got over that shock - after all, I'm still cute on the picture despite my poundage - but then came the weigh in....

The line flows upwards, the BMI is over in the red area, and my Mii shoves out its not insignificant tum and wiggles it while the program says "That's obese!"

Okay, okay, I get over that and even learn not to take the cracks about the balance test not being my strength to heart(it was a bad balance day) and not to cry at the days when my Wii fit age trots up near my real age...and sneer back at it when I haven't exercised for a day and it gives me grief...

Unfortunately, now I am trying to lose weight somewhat dramatically as have diagnosis of diabetes to add to the thrills of MS, and the scale part is important. But it varies extremely depending on where on my carpet I place it. One day it soared by 4.5 kilos!!!! I know water retention is one of those things we wimmen have to cope with, but migods - ten pounds of water? Unlikely. I hoped. I rearranged the board.

"Ooh" it cooed when I stepped on it. "Your weight has changed. Continue?" I continued. I still ended up 3 lbs heavier than I'd been the previous day, but at least I didn't feel like I needed to lie down and die.

Now, though, I don't trust it. I test my weight at least three times during a session. I'm becoming obsessed. It tells me my weight will vary by kilos depending on time of day...it mocks me with its red line and tummy wriggling...it nags me to exercise exercise exercise to get that posture of mine better, alternately praising me for excellent posture and telling me I wobble (dang left ankle) and need to work on my core. It's like an inconsistent parent, giving conditional love.

Help!

Can mental activity protect against memory problems in multiple sclerosis?

2010-06-17T14:18:00.000-04:00

Can mental activity protect against memory problems in multiple sclerosis?

So, how does one know? Work and MS...

2010-06-13T09:11:00.000-04:00

I've fought hard, filled out many forms, suffered life-threatening papercuts, and taken on the role of a disabled, can't work person.
Always, in the back of my mind, despite blinding fatigue, pain, leg spasms, cog fog, etc., I've felt a bit of a fraud. After all, I don't need a cane all the time. I'm not confused all the time. I don't sleep ALL the time (though it often feels that way). I've only had maybe three flare-ups in the past 6 months.
So I commit to volunteer things, needing a purpose. And then I often can't do them thanks to the fatigue...
But would I be able to do them for pay? That's the question. Or would I swiftly descend into the mad state I was in before leaving work, where, exhausted and stressed from trying to cope, I became hyperemotional and inappropriate?
Of course, there were issues there. One was an employee, a doctor, who abused me every day, verbally. He even sent his patients in to abuse me. The ones that survived his care. He was a rotten doctor and a bitter man, and he made my head spin with all that he pulled. I wanted to fire him. But who fires a doctor, when they are scarce? Add a stressful job and high expectations by myself and my boss, and life was pretty tense.
Could I survive a "regular" job? Could I even get a regular job, after being off for a year on LTD? Would I endanger my LTD by trying?
My head is spinning.
I can't help but think that some people manage to work on less brain power than I have on an average day, even with my MS. And the constant pain I have - well, it's been around for years. I'm used to it, and it's only occasionally it grabs me by the gut and makes me cry out. The fatigue? Well, there ARE meds for that.
But MS is a progressive disease. I've already noticed that my legs are much more spastic than they were a year, two years ago. They cramp when I stretch 'em, and I don't like walking, though I wish I could. It scares me to head out when I know the return journey will likely be pain laden and torturous.
But should I live my life afraid of what may happen? Or should I push through and devil take the hindmost?
I have a neuro appointment in 2 weeks to evaluate my latest MRI, which I hope will give some explanation as to the increasing spasms in my legs and numbness in my nethers. I'd like to say I may get some guidance there, but I dunno. Neurologists aren't the cuddly type, and will likely not have much to contribute.

Any ideas, gentle readers?

my brain aches....

2010-06-11T17:46:00.002-04:00

Just had phase two of my cognitive testing for a study being done here in Ottawa - it involved one testing session, a second two weeks later, and a third in three years. It's supposed to evaluate cognitive changes in MS over time.
In some ways it was reassuring - I can still add most numbers, can think of new ways to combine sets, can tap the space bar at a certain rate. I failed utterly at the "reorganize the discs on the pegs" task and realize I need more time in kindergarten and soon before my abilities to grasp spacial solutions leave me entirely.
Remembering words, numbers, story elements - tasking! I had to close my eyes and block out all other stimulation to focus. Wonder if I could do this during meetings at work?
Of course, got home and my blood sugar was a mere 2.8, which might have accounted for some of my fogginess.
It's difficult tracing the effects of different chronic diseases, and also I am wondering about the effects of medications and the causation of various troubles in my body. Where does one disease begin or end? Where do the medication side effects become enough to discontinue them? What causes what?
I am so confused, and it's not just from the testing....

Curious about how you'd do? Try going to this test site -there's a quick little test you can do that gives you a bit of an idea about some of what I did. http://www.neurology.ufl.edu/memory/cognitivetest.shtml

Saving all your foodstamps and burning down the trailer park

2010-06-09T13:34:00.000-04:00

http://www.youtube.com/watch?v=s8zn63ADiIE

Soy un perdedor
I'm a loser baby, so why don't you kill me?

Sometimes, with this little MS thing, you feel both like a loser, and angry enough to burn down trailer parks.
I can't even begin to tell you how TIRED I am of being told I look fine, when I've managed to drag some sensible self out of me for an hour or so in a day.
I feel frustrated that I have to explain and explain and explain, even to those who know me.
I'm tired of trying to learn the lingo for being taken seriously by doctors and neurologists.
I'm fed up with dealing with the probable side effects of medications that may not really be helping me after all, and if they are, well, it's not by much.

I imagine everyone with a chronic disease, especially if they are outwardly semi-vertical and smile, deals with this anger and frustration at not being heard. On the one hand, we're PISSED that we were given this wee challenge to mess up our lives - on the other hand we are FROTHING at the mouth about trying to explain it yet again to someone. Or excuse ourselves, or explain why we can't do something or whatever. Grrr.
Just saying....
Seriously, I don't feel like a loser, nor do I want anyone to kill me. But there's something in that song that calls to me. Perhaps that's because when I talk to health care professionals, I feel like I should be singing it to them...
Whaddya think they'd say?