Friday, November 27, 2009

Cautious Optimism

It's been a week since the announcement of CCSVI -chronic cerebro-spinal venous insufficiency - and sadly, I'm detecting dissension in the ranks. Like many announcements, or press releases for that matter, that declare a "new" treatment/cure/theory about any disease or condition, there are people who jump on the bandwagon and those who disagree vehemently, while most of us sit back and watch the fireworks.

MS Society offices world wide have been inundated with calls from people about this latest development. People want an operation to open their clogged veins. They want x-rays or sonograms of their neck to determine if they have clogged veins. Clinics are probably swamped with calls from folks wondering why this "treatment" isn't being offered yet. And people are angry that some researchers aren't completely on board with Dr. Zamboni's ideas.

If you are one of these angry people, take a breath. Now take another.

OK. Still with me? Dr. Zamboni's "treatment" is experimental. And from what I've been able to glean from a few sources, his research is not quite up to snuff as far as scientific methods go. However, both the MS Society of Canada and the NMSS in the US are taking a serious look at his ideas. His ideas have merit even if his methodology does not. The next step is to have MS researchers propose, design, and execute large, well-designed studies. If Dr. Zamboni's research and results can be replicated, then we can get all excited about a possible treatment or even cure for MS.

One critic of researchers who aren't jumping on the bandwagon used the example of ulcers and how they are now treated versus how they were treated 20 years ago. 20 years ago, it was generally believed that ulcers were the result of stress until helicobacter pylori was discovered to play an enormous role; a role eliminated by antibiotic treatment. But that discovery and its proof was 20 years in the making. The critic was making the point that the established medical community pooh poohed the idea of bacterial infection causing ulcers.

20 years! The researchers who re-discovered (it had actually been identified almost 25 years earlier) the bacteria responsible for up to 80% of ulcers, had to study, investigate, and experiment for 20 years before their treatment was deemed a good one (and effective) by the medical community.

Dr. Zamboni has stressed how he believes that MS is a vascular disease. But it has been proven that MS is a disease of the immune system. There's nothing that says the immune response in MS patients can't be caused by a vascular malformation that causes iron to stay in the brain which in turn prompts an immune response resulting in MS. In fact, we don't know what causes the immune response to begin with. Remember all the hype about Epstein Barr virus? That's why it is so important to conduct research about this theory. Because it is a theory.

A number of people are thinking that they should just give up on their current treatments in the hope that Dr. Zamboni is correct. Think again. It'll be years before we know if his theories are correct. And by staying on your current treatment (if it's working for you), you will be that much further ahead when and if a cure is declared.

Which leads me to my final point about this whole thing. Let's say this experimental treatment does work and stops MS in its tracks. Does that mean that if MS has left you unable to walk that you'll suddenly be walking again? We don't know. MS causes permanent damage to our brains. Damage that we probably cannot undo. So even if we stop MS, we may still be left with deficits and disability. And those deficits may possibly be recovered only through remyelination and/or extensive physiotherapy, if at all. It makes sense for us to stay on the treatments we have right now, to stave off future attacks and severity of those attacks so that when a cure is declared we'll have lost as little ground as possible.

Cautious optimism. That's what I'm feeling about this whole "discovery". It's very exciting to suddenly find a new piece of the puzzle. But remember, it's a piece.



Lisa Emrich said...

I had contemplated writing about CCSVI when I first read about it earlier this year on a random visit to the "This is MS" forum. But then a writer at HealthCentral beat me to the punch and I didn't need to replicate the "what if's" mentioned.

Then this past week, the blogs and MS forums (including folks in Facebook) explode after CTV advertises their program which aired last weekend. Now it was time to sit back and watch.

Like I told my Mom earlier this year - it's a really interesting theory and one which will be good to watch. Sometimes the hype can be too much, ya know? And we have seen some significant hype during the past week.

Scientific research is so tricky, and yet so precise, that we will just have to wait to see what the evidence shows....and hope that brilliant minds continue to be curious as to how to untangle this weirdness we have going on called MS.

As for me, I'm going on for my 2nd Rituxan infusion next Thursday. I haven't written about the 1st infusion in great detail yet but will soon. Leave it to me to experience some of those stage 2 infusion reactions (bordering on stage 3, I believe). But so far so good. :)

BTW, nice new photo of you!! I don't know how long it's been there but I like it!

Shauna said...


It really is an interesting theory and one I will watch closely. But it is just that - a theory. This post was mostly me blowing off a little steam after having read about people jumping the gun on this thing.

Good luck with round 2 of Rituxan - I can't help but think of Teddy Ruxpin (kids' teddy bear) when I see Rituxan.

The Wookie took that pic of me last month, but I think I only changed it a couple of weeks ago. Thanks!


Lisa Emrich said...

Teddy Ruxpin - I hadn't thought of that!!

Yeah, I kinda figured on the steam part because I too have such mixed feelings when I witness some folks go way overboard in their enthusiasm. I have opted to bite my tongue for the most part, but will certainly watch.

Kim said...

Very well put. Thanks for posting. I'd love to think that a cure is around the corner, but that doesn't help with living with MS for today and however much longer!

Herrad said...

Hi Shauna,
Good post, I agree we have to wait for this to be tested.

Blinders Off said...

It is best to be optimistic, lately there are so many new theories about MS.

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