This Is MS Multiple Sclerosis Community: Knowledge & Support

Quote from Fondatione Hilarescere :

"In how many MS cases is CCSVI also present?
Apart from our investigation – where we found virtually complete overlapping between the two diseases – other epidemiological studies carried out by research groups in the United States and Europe have confirmed that there is an association between the two diseases in at least 90% of the cases. This association is indeed robust and significant."

I remember an earlier TIMS thread where some poor woman went to Stanford and cried all the way home because no venous malformations were found. We must not forget up to 10 percent of MSers who have negative CCSVI results. Do you think these are false negatives ? or maybe special cases where venous malformations are hard to see ? Or is there another non-venous form of MS ?? I'm looking for ideas.

When I first read about the 90%, I thought perhaps that was due to some being mis-diagnosed.

I vote for misdiagnosis personally. For example, gluten ataxia was only described in the mid 90's, but I bet most people have not been given blood tests for gluten sensitivity, yet it can look like MS.

The other possibility is that there may be other kinds of stenosis tht will be honed in on with time. One thing I read in may wanderings through medical literature was of a woman who had a PERIODIC blockage of her brachiocephalic. She would get problems with her arm, but it was positional.

is it possible there are dynamic occlusions of that nature in the cerebrospinal venous system? Is it possible the very benign types of MS are related to such intermittant issues? I don't know but maybe with time such will be seen.

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Thanks for your thoughts, mohzi and marie. I had never heard of gluten ataxia before. Here is a link to a news article from 2002 about gluten ataxia :

http://www.sciencedaily.com/releases/2002/04/020424073708.htm

So we currently have :

1. misdiagnosis
2. dynamic occlusions
3. gluten ataxia
4. stenosis other than agenesis or stenosis of jugular and azygous

I really like the odds though.. maybe down the road the blood test for ms will be completed and perfected... this paired with specialized trained imaging folks, that 90% will slowly and surely insrease..

If you get tested, can you just imagine the thought process one goes thru.. almost as close to when you're first dx...


1) Man I hope they find blockage, and hopefully I can get some relief...

2) On Shit, they didn't find any stenosis...

a) did i just hit the MS lottery because I was misdiagnosed?
Maybe I just have Lyme disease which is treatable
(if you catch it early, I believe) ???
b) do i now hire an ambulance chaser and sue the bafoon who
misdiagnosed me? potentially hitting the "I'll sue your ass" lottery
c) do i really have MS and no blockage? i'm just really screwed - what do i do now..


The meds we take suck even worse... 28% effective, 30% effective, 68% effective.. offering very little relief... Then some folks choose to do nothing (take no meds. at all) and not progress...

Why does MS have to be so difficult?? It's a relentless cruel joke..

Aw, what the hell.. much like everything else in life, nothing is 100% well, except for death and taxes so why should ccsvi be any different??

Is marcstk one of the 10% ? (he is The Wheelchair Kamikaze). But I guess he does have some stenosis. So maybe he is a person with CCSVI but not MS ? It's hard to think now with MS and CCSVI being so intertwined in my thoughts, LOL.

This could work the other way round:

Stenosis present but not MS.

In my opinion, not MS YET.

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Good idea sou !!!!

So we currently have for the 10% of the MSers without CCSVI possibly:

1. misdiagnosis
2. dynamic occlusions
3. gluten ataxia
4. stenosis other than agenesis or stenosis of jugular and azygous

And we also have for those people with symptoms but no MS diagnosis OR no symptoms and no MS diagnosis :

1. CCSVI but no MS YET (I believe Sharon's daughter was/is one of these ?)

I wonder if the Buffalo researchers will follow up on the MSers who don't exhibit CCSVI on their doppler ultrasounds and MRIs ? It seems to me that there is a chance for more MS research in this subset of MS patients. I would sure love to have a conversation with Dr Zivadinov !!

Apart of a potential misdiagnosis (especially as regards CCSVI; in an interview prof. Zamboni says that at the beginning he could only find a few cases with CCSVI and with learning he found it in every MS patient) there is another possibility that could play a role.
What if the stenosis in not a permanent one but only happens when in a particular position one may sleep or work. That could be enough for a reflux but would not show up in a normal scan neither by MRV nor by sonographic examination.

That would be "dynamic occlusions" listed by Ozark, no?

You are right Algis, although I think the dynamic occlusions mentioned so far had to do with the arteries pushing the veins (something visible during a scan) and not with a particular position of the head-torso.

I'm not so sure of the 10% number just yet, I think if it bears out over a much larger sampling size then that number can be etched in stone, but my thought is by the time you take out the mis-diagnosed (very regrettable too), and use a sample size that numbers into the thousands, then that % will actually be much lower.

I know I know, if it is x % for x sized sample that number won't change much even with a larger sample, but this is all so new and my sense is there will be (as delineated in the Zamboni paper) , definitions of the disease that will be more straightforward, right now at 4 if I remember, with shades of nuance and perhaps some overlap tossed in.

Then maybe there will be a "strictly auto-immune" MS classification all alone which could benefit greatly from pharmaceutical applications. Not that there won't be any pharmies for the CCSVI'ers, but hopefully a bit more tame and not so aggressive to stop an immune system which has nothing to fight anymore...

It's going to be a very interesting couple of years coming up indeed...

Mark.

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

At the moment I'm belonging to the 10 % as Dr. Simka didn't find any stenosis. At first I checked for a misdiagnosis like gluten ataxia or Lyme disease. But then I sent my mrt's to Dr. Schelling and he is quite sure that the lesions are caused by CCSVI. He says that maybe I only have a stenosis in certain positions e.g. when I bend my neck or that my venal system is overall too weak. He says that he has found several cases which have only a "part-time" stenosis.

Apart from me another woman from our German forum was tested negative by Dr. Simka. Moreover they found a stenosis with the doppler and the mrt concerning another woman but when they did the procedure the stenosis was not there so it must have been also a temporary stenosis. This woman wrote to Prof. Zamboni about the problem and at the moment his answer is pending.

I'm going to have a mrt swi to find out more.