No wonder I feel dizzy

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?

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....

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...

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

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

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"

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.