Wondering which was first

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Wondering which was first

Postby greyman » Mon Apr 04, 2011 12:56 am

Hi
In January this year I had one of the most severe relapses in my MS "career". Before I go further let me present recent time line.

August 2010 - going off Tysabri after 21 infusions because of side effects
November 2010 - follow-up with Dr. Simka - IJVeins are patent
January 2011 - The Relapse
March 2011 - follow-up with Dr. Simka only to learn that my RIJV has restenosed.

I'm now wondering which was first. The relapse or the restenosis. And which caused the relapse? Rebound effect of going off Tysabri or the stenosed vein? Or maybe both?
Let me just add that it seems that Tysabri had really halted the disease and this relapse made it all even, as if I had never taken it. I can barely walk 10 meters now.
Does anybody know in which area I should seek answers to these questions?

Br,
Adam - greyman.
Last edited by greyman on Mon Apr 04, 2011 4:47 am, edited 1 time in total.
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Postby sou » Mon Apr 04, 2011 2:38 am

At first, I am not a doctor, thus this is not a medical opinion.

Rebound effect many months after stopping Tysabri is somehow unlikely, but it could be the case, though.

The only restenosis/relapse study we have in our hands is the Zamboni's pilot angioplasty study, in which relapses were 100% associated with restenosis. However, it was small and there is no conclusion, yet. I am afraid nobody can answer for sure at this time.
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby LR1234 » Mon Apr 04, 2011 3:36 am

My right jugular is 100% blocked and has been for 8 months since second procedure and those 8 months have been the best of my "MS career".
(although I am starting to have some issues again.....I have been changing blood thinners dosages though and changing types)

I personally believe MS causes inflammation, inflammation causes fibrin build up and inflamed vessels and this leads to stenosis or it changes the veins so they can't flow properly anymore.

This is my opinion only but I reckon this is happening in many veins in the MS body not just jugulars and azygos. The body tries to find other routes for the blood to flow but eventually it becomes progressive as it can no longer compensate
I think we need to stem the inflammation to save the vessels early on.

Again this is only my opinion....no facts there whatsoever!

I reckon relapse then restenosis as some people are relapsing despite having patent veins.
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Re: Wondering which was first

Postby Rici » Wed Apr 06, 2011 10:06 am

greyman wrote:Hi
In January this year I had one of the most severe relapses in my MS "career". Before I go further let me present recent time line.

August 2010 - going off Tysabri after 21 infusions because of side effects
November 2010 - follow-up with Dr. Simka - IJVeins are patent
January 2011 - The Relapse
March 2011 - follow-up with Dr. Simka only to learn that my RIJV has restenosed.

I'm now wondering which was first. The relapse or the restenosis. And which caused the relapse? Rebound effect of going off Tysabri or the stenosed vein? Or maybe both?
Let me just add that it seems that Tysabri had really halted the disease and this relapse made it all even, as if I had never taken it. I can barely walk 10 meters now.
Does anybody know in which area I should seek answers to these questions?

Br,
Adam - greyman.

Hi
http://www.ccsvi-ms.pl/forum/viewtopic. ... 93ea1172e7
http://www.ccsvi-ms.pl/forum/viewtopic. ... 93ea1172e7 ,
greetings
Rici
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