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  I've withdrawn from antidepressants before and it is some scary stuff, believe you me.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.

A positive outcome from the CCSVI urgency?

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

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!

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

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

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.