November 20, 2013

Sometimes, serendipity is a scary thing...

I took nursing back in university. My favourite favourite class was microbiology, so much so that I often wondered if I should have hung out there instead of going on to be a nurse.

We had a great prof, who would spice up his 8:30 AM lectures (with many many slides) with unusual pictures,  beer tasting, jokes, and other things that actually kept us awake despite the early hour and the darkened classroom.

My favourite bacterium was Clostridium Perfringens, primarily because it is the cause of the nauseating-sounding gas gangrene. Plus it also hangs out in gut bacteria and leads to food poisoning. 

And it has a cool name.

From Wikipedia:
Clostridium perfringens (formerly known as C. welchii, or Bacillus welchii) is a Gram-positive, rod-shaped, anaerobic, spore-forming bacterium of the genus Clostridium.[1] C. perfringens is ever present in nature and can be found as a normal component of decaying vegetation, marine sediment, theintestinal tract of humans and other vertebrates, insects, and soil.
C. perfringens is the third most common cause of food poisoning in the United Kingdom and the United States though it can sometimes be ingested and cause no harm.
Infections due to C. perfringens show evidence of tissue necrosisbacteremiaemphysematouscholecystitis, and gas gangrene, which is also known as clostridial myonecrosis. The toxin involved ingas gangrene is known as α-toxin, which inserts into the plasma membrane of cells, producing gaps in the membrane that disrupt normal cellular function. C. perfringens can participate in polymicrobialanaerobic infections. Clostridium perfringens is commonly encountered in infections as a component of the normal flora.In this case, its role in disease is minor.
The action of C. perfringens on dead bodies is known to mortuary workers as tissue gas and can be halted only by embalming.

It's a nasty bacteria with a nasty name that rolls off the tongue in a most satisfying way. Imagine - GAS gangrene! It sounds like something out of Harry Potter. I adored it, I loved saying it, I think I even cultured it in the lab.
And now it turns out it may be one of the causative factors in MS:
Of course, early days yet, and I still think Epstein-Barr has the greater role, but I think it's rather amusing that my favourite bacteria might be the cause of my illness.
Of course, I do have holes in my brain, so perhaps I'm not thinking properly about what is funny and what is not. But c'mon, say it with me:

Clostridium Perfringens!

On the good side, every discovery is another step closer to treatment and cure. But maybe, just maybe, first year microbiology students shouldn't be culturing this creature.

November 18, 2013

Montel Williams and the whole MS thing

Normally I am resistant to the whole "I'm a celebrity and I'm suffering with a disease and therefore I can tell everyone else how to live" deal. That started with one of the first books I read about about a celeb with MS who talked about how she had to get her chauffeur to drive her closer to places and how the nanny had to take more hours with the kids, etc. I just don't think the whole illness experience is the same when you can afford multiple live in help people and vacations whenever you want as it is for we regular folk.
Oh and let's not get started on the MD on call thing…
But Montel Williams seems somewhat different. Yeah, there's all this "I feel good" stuff about how MS will "never have him", but most of what he posts seems to be reasonable, and he seems to follow the research, taking the effort to review CCSVI and denounce it for the fraud it is.
On the other hand, he's pushing outrageously expensive multivitamins with mystical ingredients and whopping doses of Vitamin B, and I'm not too sure about all that stuff.
I'm glad Montel can exercise and keep fit and chat with all the experts and all that but his website seems to be pretty much the same stuff you can get from the MS Society (Except they don't push supplements or Fampyra). He might be able to help keep you motivated to exercise (which I think is le plus ultra treatment for MS) with cheery let's go messaging and he is, let's face it, a kind of handsome guy, so not difficult to look at - so if you think he'll help, go sign up for his program.
If you do, let me know what you think. Does he make any sense?
Or is he another very rich guy with personal trainers and cooks who lives well with MS because he can hire everyone to do everything for him?

November 13, 2013

Numbness and by the way, will I notice sex ever again?

I'm sending out my book proposal for the MS and Intimacy book sometime next week. It's sort of funny, because right now the only intimacy I have is with my new adopted cat, who comes over and kneads me.

But all I can think of is the line from "The Truth about Cats and Dogs", where the vet is taking calls from the public on her radio show, and this guy calls in and says his cat likes to lick him and keeps doing it and he seems to have developed a rash (location unspecified). The vet, Janeane Garofalo, says, "You can love your pets, but remember you can't LOVE your pets."

Still, it's nice to be kneaded. As it were.

Meanwhile, numbness continues. If I weren't such a chicken I'd attempt cutting just to see if I'd feel that but heck, I'm in enough pain already, why go ask for more? Besides, the blood is messy.

I remember from my past intimate moments oh so very long ago that one of the fun things was that since so much of my body was numb, the spots that felt, felt EXTRA. It was like a treasure hunt. Nothing, nothing, nothing, WOW, nothing…Fun for play and exploration with a patient partner.

I also remember the summation principle -where the more I was touched, the more synapses would light up so that I could actually feel things, even if they didn't feel where they were touched, but elsewhere, so to speak. Like someone would stroke my arm and I'd feel that in my knees or something. Still felt wonderful. It was as if my partner was adding current to my fried wiring and after a certain point, the lights turned on.

Sometimes it's alarming for my partner, I think. There I am, la di da, yes this is nice, whatever. Did I shut off the stove? And then, kerplowie. Not necessarily THAT kerplowie, but fun anyway.

Anyway, since the cat, handsome as he is, does not have that effect, I'll simply have to remember what it was like for my book.

Memories are nice, too. mmmm.

November 9, 2013

"I have MS but it doesn't have me…"

What a load of malarkey.
Every time I hear this or read some cheery news about how wonderful life with MS is, I want to scream. Really loudly.
Except that I can't because I'd like to accomplish something tomorrow and extremes of emotion exhaust my fried nerves.
It's not that I'm not grateful. Honestly. If I had to have a chronic debilitating disease, MS is at least amusing. It changes and wobbles and is completely unpredictable. It makes every morning an exciting trip of "can I feel this" and "can I stand up without falling over?" and "will I need to nap half the day today?" It's exciting.
But it also sucks, absolutely.
I am tired of trying to live normally only to be hit upside the head with a flare-up or a sudden inability to do math or fatigue so intense I can't get myself out to buy milk, let alone do anything else.
I used to be a can-do type of gal, taking things on and throwing them about, accomplishing three things with my right hand while juggling another two with my left. I could multi-task. I could work with music on in the background
Now I find myself typing okay with one hand while the other lolls about and goes on strike or types at a different speed. My brain packs up and wanders off at odd moments and words go walkabout.
Most of the time I'm fine.
But I can't predict it, see. When my brain goes out on me, it's a sudden thing. I become exhausted in a moment, crash and burn.
And so I find myself limiting my activities, withdrawing from things, gradually detaching myself from positions of responsibility, backing off, choosing things that can be cancelled in a heartbeat.
So, I have MS, and yes, it does have me. By the throat.

October 27, 2013

Fighting the fatigue monster

Feeling angry and generally despairing. 
Went to an event this weekend and had to return early thanks to MS exhaustion. Beginning to realize that as time goes on and the fatigue and confusion hasn't lifted, I am likely left with a bit or permanent cog fog and a lot less ability to do things...
It is frustrating and surely one of those losses I'll have to get used to over time. As with the other losses in MS, it just becomes accepting a new normal, but along with that comes the loss of dreams for the future...dreams of travel, publication, probably even a partner.
It's interesting looking down the skinny end of the telescope as my world narrows. Things close in. Friends become so important, especially true ones. Joy becomes more valued, a hearty laugh worth everything.
I've chosen wisely. I made a move to paradise, Nova Scotia. I can be outside in a wildly beautiful spot in moments. I like the people here, and I have made good friends. Health care is great, the climate is perfect, and whenever I need the sea, it's steps away. Music is everywhere, the library is fantastically accommodating, fresh apples arrive every fall...
But I'm still grieving today.
I'll have adjusted by tomorrow. Nothing that a good rest and some PBS mysteries can't solve...and a few fresh fall Macs from our last run down the valley.

October 5, 2013

Lurching towards Kalamazoo

Ah, the joys of impaired balance. 
Why, I can look drunk in the middle of the day without having tasted a drop.
Tonight, returning from a BBQ at a friend's house, I turned right to head towards my car and almost didn't make the turn. My upper body lurched attractively opposite to my legs and there was some arm spiralling before I rebalanced. Thank heavens there weren't any cops around to make me do the walking the line test. 
Stone cold sober, me. Tacking to the left, I gradually made my way to the car, struggled with the lock on the door, got in and drove home. I think. I mean, I'm here, but the trip home wasn't a fully cognitive one.
It's this sort of thing that keeps me home nights.
Time to get a cat for company.

October 3, 2013

see what's happening at ECTRIMS

Dr. Karen Lee from the MS Society is blogging from ECTRIMS in Copenhagen.
You can also follow her on Twitter @dr_karenlee
Or researcher Jordan Warford at @jrwarford

September 23, 2013

Fampyra diaries: epilogue

Hey all - 
Well, Fampyra and I have parted company, at least temporarily. I was finding it contributing to my gastric reflux, it was disturbing my sleep to the point where my little FitBit was recording me in bed for 9 hours but asleep for 3. I'd think it was the machine but before I took Fampyra and after I stopped taking it, my sleep hours lengthened to 6 or more. So I must've been doing something when on it.
Tough to guess as I am in bed alone (see previous post) but thats my thought.

Plus I can't really afford the $570 monthly charge - I could, I suppose, if I really felt it was helping that much.

Of course, now that I'm off it, I am having increasing trouble walking but to be fair, I was before I went off it, too - just the progress of the disease, I think.

I have an appointment with my doc in October and will get re-evaluated then. She may think I should try it again. I may differ. 

If any of you have had sleep disturbances when on Fampyra, write it in the comments....would love to know how everyone else's experiences are. I just know I need more than 3 hours of sleep a night...

Arggh and Bloody Hell and sex and MS

Okay. A few months ago I pitched a book about MS and intimacy and there was publishers interest in it - and then my co-author dropped out of the project and I was fed up and decided to not write it, for the moment anyway.

And then I saw this today and I am mad again. Once again, the "recommendations" are merely a list of things that go wrong in MS, and the recommendation to "Talk to your loved one".

OF COURSE it is important to talk to your partner (if you have one, which I don't and let me say that dating with MS is another whole ball of wax), but just talking about it won't help the problem. My experience in talking with neurologists and others about this is that they toss blue pills and stuff at men (lest their threatened penises get all worried) but provide nothing in the way of help for women other than a bottle of lube, which, face it, is more about the man than the woman.

It's so frustrating! Lately I've gone all completely numb again and I am cheerfully considering a cat as a life partner cos I have no reason to think about anything else, and yet I know there is no one in my health care circle who can help me.

So I'm off to find another co-author and research this myself and then share what I find out. Cos if you're out there with MS and want a little physical affection, you are alone at the moment.
from the inimitable

Here's the OH SO HELPFUL article.

Neurologic Impact of Multiple Sclerosis on Sex

Sexual arousal begins in the central nervous system, as the brain sends messages to the sexual organs along the nerve pathway in the spinal cord. MS-related changes to these nerve pathways can directly or indirectly impair sexual functioning. For example, the following symptoms can occur as a direct result of myelin breakdown in the spinal cord or brain:
  • Decreased sex drive
  • Altered genital sensations (numbness, pain, increased sensitivity)
  • Difficulty or inability to maintain erection
  • Decreased vaginal lubrication
  • Decreased vaginal muscle tone
  • Ejaculation difficulty
  • Problems having an orgasm
The following symptoms can arise as a consequence of MS physical changes or treatments:
  • Fatigue can suppress sexual desire
  • Spasticity can interfere with sexual positioning or cause pain
  • Sensory changes can make physical contact uncomfortable.
  • Pain

Psychological Impact of Multiple Sclerosis on Sex

A loss of interest in sexual contact or intimacy may arise as a result of psychological or social issues associated with multiple sclerosis, such as:
  • Depression
  • Performance anxiety
  • Changes in self-image or body image as a result of disability

What Can Be Done to Improve Sex With Multiple Sclerosis?

Talk to your partner about your sexual issues and multiple sclerosis. The most important way of dealing with sexual difficulties is to discuss your feelings with your loved one. When MS begins affecting your sexual desire, talk to your partner. Confiding in your partner deepens intimacy and may help resolve concerns relating to sexual intimacy.

August 3, 2013

Head and shoulders, knees and toes : Fampyra diaries 3

Well, I'm a shower of sh** today, as my charming ex-father in law would put it.

On Fampyra now for several months, and I am walking better. Is it the Fampyra? Who knows.

I'm also having a lot more spasticity in my muscles. Fampyra? Who knows.

Last several days, my legs and feet and bum have been very unhappy with one thing or another. Twitching, spasming, my toes curling up or just painful and very touchy. Shoulder was damaged in another incident, so I'm hobbling along, a mass of unpleasant sensations with no where to put them.

I've taken to using my rollator if I have any distance to walk. Sigh. Sexiness quotient = 0.
Of course, staggering like a drunk leads to entirely the wrong sort of attention. Tough call...

So, slurping bafclofen and my medMJ and hoping the pain goes away soon.
Frustratingly, sometimes it does, completely, for, like, ten minutes, and I can walk like a normal person and my hips and knees stop complaining. Then the mask drops back down again and I am writhing.

I suspect a new lesion in my spine...maybe some compression there? As we all know, it's foolish to diagnose yourself, but so much of chronic disease management is just that.

Keeping on with Baclofen, Fampyra, and now back on Cymbalta to deal with the depression caused by the holes in my head. Maybe it will help with pain, too - it did before. Polypharmacy, here I come, yet again.

Am paying for my Fampyra now after getting two free sample months. Don't know if the benefit is worth the cost. will have to consider when this batch is done. It DOES seem to be disturbing my sleep pattern.

June 11, 2013

Ah, that old devil Epstein-Barr...

Interesting article about the link between MS relapses and EBV activity. Most have EBV antigens, but people with MS have overactive and enthusiastic ones, which apparently grown and such in a MS relapse. PLease read the full article by clicking on the link - but here's the start of it as a temptation...

Epstein-Barr virus (EBV), the nearly ubiquitous herpesvirus that can cause infectious mononucleosis (or “mono”), seems inextricably tied to multiple sclerosis. But the nature of this link remains mysterious. Now, a new study published on 11 April in PLoS Pathogens (Angelini et al., 2013) shows that in patients with relapsing-remitting MS (RRMS), immune responses to active EBV cycle hand in hand with relapse, correlating the virus' activity with MS activity for the first time.

The study examined cytotoxic (CD8+) T cells—immune cells that kill infected or abnormal cells by recognizing specific antigens carried by those cells—and found an increased T cell response to lytic, or active, EBV in the bloodstream of MS patients during disease relapses. The response receded when MS quieted down. Although several different immune cells play a role in responding to viral infections, CD8+ T cells are particularly important in controlling such infections and bind directly to infected, antigen-presenting cells, meaning their response is highly specific to a single viral antigen. These results suggest that viral flare-ups may prompt MS inflammation. Moreover, this correlation could lead to a new blood-based biomarker for MS relapse and points to the possibility that the right antiviral drugs might dampen MS.

May 25, 2013

Fampyra diaries, 2

So far the vertigo that forced me off Fampyra last time seems to not be present, thank heavens.
Is it helping? Well, I FEEL different. Swam on Friday and found it harder to swim but that's cos I was going a lot faster - normally it takes me a minute per lap, and Friday I had knocked that back to 45 seconds.
Significant improvement there, but it still feels like my body isn't quite right.
MS walk tomorrow. Apparently there's a 3 km route. With luck I'll make it all around in good time.

Vision still different than it used to be. I suspect either I am over my optic neuritis or just getting older - haha!
Might be time for another visit to the eye doc.

May 22, 2013

Fampyra diaries

I've recently been started for the second time on the MS drug Fampyra. It's been approved for use in people with Multiple Sclerosis to aid walking speed and ability.
I tried it back in January and had to stop it because of overwhelming vertigo  - I think there were a bunch of factors at play there, from recovery from a trip to Cuba to the flu, to a urinary tract infection (one of the known side effects of Fampyra, and unusual for me). Now that I've recovered from those things, I thought I'd give it another go.
It's not inexpensive. A monthly dose costs upwards of $600. My drug insurance doesn't cover it, though I can write it off on my taxes, I suppose. So it's gotta be good for me to continue it.
When I tried it last time, my walking dramatically improved. I could walk much further and faster and for a longer time - a significant change in all three parameters. But is it worth the money?
While the drug, a potassium channel blocker, is approved to help with walking, I am wondering if it will also have an effect on other functions affected by MS.
Here's what the MS Society of Canada has to say about the drug:

Biogen Idec Canada announced that FAMPYRA (fampridine sustained release tablets or fampridine SR) is now available for prescription in Canada. Health Canada approved
PrFAMPYRA™ on February 10, 2012 for the symptomatic improvement of walking in adults with multiple sclerosis (MS) with walking disability (EDSS 3.5-7). FAMPYRA is the first approved treatment for walking impairment in adults with MS.

Fampridine blocks tiny pores, or potassium channels, on the surface of nerve fibres, which may improve the conduction of nerve signals in along nerve fibres whose insulating myelin coating has been damaged by MS.

Common side effects of fampridine include urinary tract infection, difficulty sleeping, dizziness, headache, nausea, weakness, back pain, problems with balance, MS relapse, burning, tingling or itching of the skin, irritation of the nose and throat, constipation, indigestion, throat pain. The initial prescription should be for no more than 4 weeks, and assessment for improvement in walking should be carried out within that timeframe.

Please contact your physician for more information about treatment with Fampyra and the FAMPYRA In Motion™ program.

My excellent doctor here has seen improvement in cognition and sensation and urinary function and all that in her other patients as well, which makes a certain amount of sense since the effects are systemic and the conduction, if improved in walking nerves, should also be improved in other central nerve pathways. I've been having problems with my vision for a few months now - blurring and variability - and I am seriously hoping for some improvement. Plus I'd like to be able to walk well enough that I could lose some weight, thus making walking easier even if I'm off the drug.

I thought I'd keep track of things on my blog, in case anyone else is considering the drug. We all know that anecdotal reports don't = truth but maybe my experience will be of use to those of you wondering.

Today I went to the pool, as I do two to three times a week, and swam 32 laps. I can do up to 50 on a really good day but have been generally holding steady at 36 to 40. I felt good, but after two pills (last night and this morning), my body feels different. Meatier, somehow.
I'm somewhat dizzy, and I am having difficulty with typing but that's normal for me. Onwards ho!

May 20, 2013

New approach to improving treatment for MS and other conditions

New approach to improving treatment for MS and other conditions

Interesting piece on a drug that treats mitochondria and seems to have an effect on MS in mice.
Ever since I studied microbiology and cell functions in high school and college, I've been a fan of these wee powerhouses of the cell. Back then no one know what they or Golgi bodies did. It's exciting to learn, along with the rest of the world, what they are all about.

Maybe it'll turn out that that is where the solution to MS lies...

April 2, 2013

Need your input for MS and Intimacy book!

 While ago I posted a link to the Survey Monkey survey I'd put together for the book I'm writing with Karen Kalinowski about MS and Intimacy.

In case you don't know, I'm a former registered nurse, epidemiologist and freelance writer, living with MS. Karen is a Sex and Kink educator who has worked extensively with people living with disabilities.

A good many answered, but more input is needed. Some of the comments said that there didn't seem to be much focus on partners' opinions, so I've created a secondary survey for partners.

Both surveys are COMPLETELY ANONYMOUS. There is no was I could ever link your response to you, your location, anything about you. The online survey people can't do that either.

It does allow me to compile responses and gather information that will guide the book's creation. Won't you please help me put together a resource that will help you and your partner as you live with MS?

The surveys are below.
Only ten quick questions each...

Partners of persons with MS

March 22, 2013

The requirement to charm

I was at the pool today, swimming my laps in the attempt to forestall the onslaught of MS spasms. While I was there, I saw a fellow  "one of us" arrive in a wheelchair, with a helper of some sort, a young lifeguard or physio or something. He spent time leading her around the pool, letting her kick her legs, stand with support, get her unwilling muscles moving.
And all the way around, she was charming him. Joking, smiling, trying to please him.
As we all do. We all tell people we're doing "just fine", we joke about the times we wobble over or burn pots or forget what we were saying or miss the point or have to struggle to walk. And if someone is with us, we try even harder, pulling our lips back, grinning and joking, trying to be charming so that our helpers will stay with us, look after us, enjoy our company.
It's a terrible responsibility, this need to be cheerful through the trials of chronic illness.
But we want company, assistance, friends, so we joke along, not revealing as much of ourselves as we need to to be truly understood in case those around us understand and leave us, alone, in the water, to flounder.

March 18, 2013

And once again CCSVI fails to prove itself...

It always blows my mind that people in favour of CCSVI say, "Follow the money" and blame big pharma - well, what about the docs who are making millions on this procedure?

Highlights mine...

Vein Surgery for MS Fails in First Controlled Trial

SAN DIEGO -- Outcomes in multiple sclerosis patients were not improved with a controversial surgical procedure -- percutaneous transluminal venous angioplasty -- to improve blood flow in cerebrospinal veins, results of a small, double-blind, controlled trial indicated.
Among nine patients who underwent the venoplasty to clear blockages, clinical outcomes and brain lesion measures were generally worse after 6 months than in the 10 patients who received a sham procedure, Adnan Siddiqui, MD, of the State University of New York at Buffalo, and colleagues found.
Patients in the active-treatment group had a total of four clinical MS relapses during follow-up, compared with one relapse in the control group. MRI lesion volumes and numbers also were no better and, for some measures, showed strong trends toward worsened disease activity in the patients undergoing venoplasty.
Data from the study were released in advance of Siddiqui's formal presentation next week at the American Academy of Neurology's annual meeting here.
The findings were especially notable because they represent the first report of a randomized, controlled, double-blind trial of the procedure -- and also because Siddiqui and co-principal investigator Robert Zivadinov, MD, also of the University at Buffalo, have been more accepting than most U.S. neurologists of the theory underlying the venoplasty procedure.
That theory goes under the name of "chronic cerebrospinal venous insufficiency" or CCSVI. It gained worldwide prominence in 2009 when Paolo Zamboni, MD, of the University of Ferrara in Italy, reported that every MS patient he examined showed blocked veins and reduced blood flow out of the brain, whereas none of the healthy controls showed such abnormalities.
Moreover, Zamboni asserted that venoplasty in his MS patients led to dramatic relief of symptoms, amounting to a virtual cure in many of them.
But attempts to replicate the findings of Zamboni's uncontrolled, unblinded study in other settings have often failed, with neurologists elsewhere reporting either that they found CCSVI only rarely in MS patients, and/or that it was no more common in MS patients than in controls.
In the largest CCSVI study to date, conducted in Italy and using blinded central interpretation of the ultrasound scans, only 3% of MS patients and a slightly smaller percentage of controls were found to have the condition. The finding led the Italian Multiple Sclerosis Society to declare CCSVI effectively nonexistent as a cause of MS.
Nevertheless, a small industry centered on the theory has flourished, especially in Latin America, where endovascular surgeons perform venoplasty on MS patients wealthy enough to afford it -- despite official recommendations from neurology groups that such procedures hold many risks and no proven benefits.
Zivadinov, in an interview with MedPage Today last year, said that patients should undergo the procedure only in the context of a clinical trial. That was also the message Siddiqui conveyed with the results of their team's current study.
"This is not the last word on this endovascular treatment for MS," Siddiqui said in a press release. "This is the first word because this was the first double-blinded, randomized, sham-controlled trial on the subject. However, these findings lead us to caution strongly against the general acceptance of this invasive procedure for MS patients."
In the study, called PREMISe (Prospective Randomized Endovascular Therapy in MS), an initial 10 patients underwent the venoplasty procedure as a phase I safety test, with no serious adverse events noted.
For the phase II efficacy trial, Siddiqui and colleagues recruited 20 patients to be randomized to the active procedure or to a sham in which patients were catheterized but no venoplasty was performed. Only the interventional surgeon -- not the investigators who evaluated outcomes -- was aware of treatment assignments.
Patients had received an initial diagnosis of CCSVI on the basis of imaging studies as well as confirmed MS of the active-relapsing, secondary progressive, or progressive-relapsing forms. Patients had EDSS disability scores of no more than 5.5.
After catheterization, all patients in both arms were confirmed by the investigators to have CCSVI using catheter venography to establish luminal diameter reductions of at least 50% in the azygous or internal jugular veins. Venography findings had to be confirmed with intravascular ultrasound.
One patient in the phase II study was found not to meet criteria for CCSVI during this procedure and was excluded, leaving 10 in the sham group and nine in the venoplasty group.
Mean EDSS scores were 3.9 in the phase II patients, with median disease duration of 9 years (range 2 to 31). Mean age at disease onset was 35; at enrollment, mean age was 46.
Besides relapses, Siddiqui and colleagues examined other clinical outcomes including EDSS score, 6-minute walk distances, and Multiple Sclerosis Functional Composite score.
None of these measures changed significantly from baseline in either group, and there were no between-group differences, the researchers indicated.
In addition to the lack of apparent clinical improvement in patients undergoing the procedure relative to controls, there was no sign that the venoplasty improved blood flow.
Both groups showed increases in venous sufficiency from baseline, according to the researchers' hemodynamic measurements, but they were virtually the same (P=0.894)
MRI measures also did not favour the venoplasty group:
  • Mean cumulative new T2 lesions: 0.3 sham, 2.2 venoplasty (P=0.07)
  • Mean T2 lesion volume change: -4.7% sham, 13.9% venoplasty (P=0.04)
  • Mean cumulative T1 lesions: 0.2 sham, 0.8 venoplasty (P=0.14)
  • Mean T1 lesion volume change: -14.6% sham, -10.2% venoplasty (P=0.81)
  • Mean cumulative contrast-enhancing lesions: 0.3 sham, 2.4 venoplasty (P=0.06)
One serious adverse event was seen during the randomized phase, but Siddiqui and colleagues determined that it was not treatment-related: a cardiac event treated with a pacemaker.
A single case of swelling and soreness in the neck was considered treatment-related. However, it was rated nonserious as it did not require additional treatment, the researchers indicated.
"Our strong recommendation to patients and to practitioners, who have, in earnest, been seeking betterment for their disease and a cure for MS is that they should instead consider enrolling in trials, rather than undergoing these procedures on a fee-for-service basis," Siddiqui said in the press release.
The study was funded by Kaleida Health, the Direct MS Foundation (Canada), Volcano, ev3 , Codman & Shurtleff, the Jacquemin Foundation, and individuals.
Siddiqui reported relationships with Hotspur, Intratech Medical, Stimsox, Valor, Concentric, ev3/Covidien, GuidePoint, Penumbra, Genentech, Abbott, and Neocure. Other study investigators reported relationships with Teva, Biogen Idec, EMD Serono, Bayer, Genzyme-Sanofi, Novartis, Bracco, Questcor, Shire, Novartis, Actelion, Allergan, Nelezza, Pfizer, St. Jude Medical, Toshiba, Boston Scientific, Cordis, Micrus, W.L. Gore, and numerous other drug and device companies.
Primary source: American Academy of Neurology
Source reference:
Siddiqui A, et al "Percutaneous transluminal venous angioplasty (PTVA) is ineffective in correcting chronic cerebrospinal venous insufficiency (CCSVI) and may increase multiple sclerosis (MS) disease activity in the short term: Safety and efficacy results of the 6–month, double–blinded, sham–controlled, prospective, randomized endovascular therapy in MS (PREMiSe) Trial" AAN 2013; Abstract P04.273.

March 9, 2013

Scarfolk Council: The 'Inoc-uous' vaccination machine

Scarfolk Council: The 'Inoc-uous' vaccination machine: Scarfolk primary school installed one of these Inoc-uous devices in the basement in 1974. The entire school's pupils queued up for their...

Maybe this would help with those pesky injections?

February 3, 2013

Androgenic hormones could help treat multiple sclerosis, study suggests

Androgenic hormones could help treat multiple sclerosis, study suggests

Great. Here I've been fighting an ongoing battle with facial hair, and now it seems it's a good thing to have rampant testosterone. Might explain the relatively quiescent progress of my MS, my muscles that are unfemininely large, and my ZZTop beard.
Back to my nightmare of being old and unshaven in a home...though I figure I could at least be cool....

ZZ Top Under Pressure

January 22, 2013

Impaired social cognition in multiple sclerosis

Oh goodie.
As if it weren't enough that our bodies turn on us and make us dependent, and our minds lose things and start storing socks in the freezer and ice cream in the hall cupboard, it appears that we lose the ability to interact appropriately with the people around us, often the very people we need to keep us from falling apart.

This study looked at how people with MS responded to a film of four people sitting around a dinner table having a discussion. At various points in the movie, it is stopped and the patient is asked to identify the emotion being expressed by the person at the table.

Apparently we don't do so well at that.
Like autistic people...we seem to lose the ability to read people's faces appropriately, which might account for a few mixed experiences I've had lately.

Of course, this study also gives us an excuse for misunderstanding people. We can just trot out the statement, "Remember - we MSers fail the MASC! You have to tell me what you are thinking!"

Finally, a reason to have real discussions, instead of being expected to read minds.

January 14, 2013

"Sticks! Sticks!"

I just came back from five days in Havana Cuba. I'd gone down with my kids with the idea that they could help me muddle through the city, push me in a wheelchair if needs be, do all that stuff.
They were immeasurably helpful, and I'm grateful they were with me, given the potent mix of fatigue, sun and rum that was coursing through my veins (with a few prescribed medications that were labelled firmly 'do not take with alcohol!') Suffice to say my liver is having a pleasant little detox right now.

One of the best things I did was bring my Nordik Poles with me. I used them for balance and to give me a little push at the end of the day when walking was too hard. Or in the middle of the day, ditto.
My bearded boys, one son's gorgeous red headed girlfriend, and little ol' grey-haired me with my sticks made quite an entourage as we walked through the old town. Handsome Cuban men called out to us - "Hey, Gringa! Sticks!" as I wandered by.
I think they thought I was on some sort of mad fitness regime, taking ski poles through Havana.
Still, they worked very well, and I recommend them highly.
The wheelchair less so - the cobblestone and damaged roads in Havana would likely have vibrated my fillings out as I went by, or put my spinal column into shock.
My sticks and I, though, we made it.

Then I came home and slept for a week. But at least I'd seen Havana.

January 9, 2013

Being a bad patient

I've never been what anyone would call "cooperative". I'm far too mulish and convinced of my own intelligence to go along with anything without some resistance.

But around the MS thing, I do try and be a good patient.

Because I worked in primary care, and I know well how bad patients get treated. Non-compliant patients get treated like scum. No one asks if the patient had good reasons for not taking the prescribed medication - or if anyone ever asked him. No one likes the patient who misses appointments (in primary care in Ontario, three such misses without good explanation meant you got dropped off the doctor's list. But who determines if the explanation is good?)

Patients who argue with their doctors get branded with the "personality disorder" moniker and then get pushed to the bottom of the list.

So, as a nurse, I've always tried to be endlessly polite and then do my hollering AFTER I got off the phone. I take my medications (mostly) like a good girl, and try to be responsible about self-care.

Today I nearly lost it, though.

I was booked for a pelvic ultrasound for this morning at 9:50. They told me to show up 15 minutes early, but I'm wise and didn't. I drank water on the way so I wouldn't be frantic with the need to pee. I'm not pregnant but I suspect looming fibroids and my MS has tinkered with my bladder sensation and control.

I walked through the maze of the local children's hospital, where I sat and waited for my number to be called. It was. At that point I was able to register. I went back and sat down. And waited.

I was surrounded by pregnant women, alternately breathing and crossing their legs. If you've never been pregnant, you can't possibly appreciate what it's like to wait for a pelvic ultrasound. You are nervous, want to see the baby, and the same baby is tapdancing on your filled bladder.

With my middle child, I was so full by the time they took me, they told me I had placenta previa - when really I had too much pee in my bladder.

So I was sending soothing and understanding glances at the pregnant woman while gradually getting more and more uncomfortable myself, as the HOURS passed.

Eventually  - a full hour + after my appointment and with three more people to go before I could be seen - I couldn't bear it any longer. I went to the desk and politely told the lass that I had to go (in both senses of the word). She whispered she'd try to rebook me. Much was made of the fact that I'd already registered - perhaps that gets fed back to some assessment?

Anyway, my rebooked appointment is at the end of APRIL. In four months. Surely to God they had an opening before then. Not that I'm in any hurry to recreate this experience.

You can't tell me that wasn't punishment for me leaving.

And now I'm mad.