New Biogen trial - regenerating myelin

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

Postby Asia » Thu Jan 28, 2010 5:25 am

mangio wrote:Bestadmom,
I know of alot of people with much disability, do you feel it is advisable
for them to try to get CCSVI testing/treatment? txs


I don't see why not. I'm EDSS 8 and, truely, I'd be thrilled to stay that way, I mean MS is progressive, we all know that. Surely 8 is loads better than 9, right?
MS (progressive type, not sure which) since 1991
Current EDSS 8 (self-assessed)
Not taking any MS meds since 1998
Epilepsy (had 4 attacks to date) since 2004
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Postby bestadmom » Thu Jan 28, 2010 6:58 am

SJ - although I have a pretty warped and sarcastic sense of humor, (it's the NYer in ms) I have to credit my husband with the silly inventions in my siggy. He's a product photographer and dreamed up the Liberator5000 and put together the whole thing. Did you also see his hydro-doppler and click on the video? It's nuts but funny.

Asia and Mangio - My EDSS is 8 or 8.5 and if I can stay that way, it beats the alernative. I still work full itme, half of the week going by train to NYC. The last thing I want is to be be bedridden, incontinent, and on disability, and I am very afraid of that happening. I've got some unusual stenosis issues that prevent my jugular from being opened, so I'm not sure if I am even "fixable".
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Postby tzootsi » Thu Jan 28, 2010 8:22 am

I remember reading something about Biogen and Lingo-1 about a year ago, where they were looking into it as an 'add-on' to Avonex. Now it looks like they are looking at Lingo-1 as a stand alone? Interesting.....
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Postby babiezuique » Thu Jan 28, 2010 2:40 pm

I'm following this wonderfull story you are all builting from real infos! I have never been so exited for 10 years...than in the last feuw months!
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Postby KDGO » Mon Aug 30, 2010 7:00 am

I know this is water under the bridge but these 2 excerpts show something in common experts on strokes

Start MS trials now, says ex-U of S prof

Researcher proposed bloodflow theory in 1998

BY HANNAH SCISSONS, THE STARPHOENIXAUGUST 28, 2010

Bernhard Juurlink published a hypothesis in 1998 -- while he was a scientist at the Cameco MS Neuroscience Research Centre in Saskatoon -- that MS is related to decreased bloodflow in the brain and spinal cord.
"It was very difficult to get anyone interested in this idea -- the idea was easily testable by, for example, looking for bloodflow in white matter in MS patients," Juurlink said in an interview with The StarPhoenix this week. "I tried to first interest clinical colleagues to image brains of MS and non-MS patients, to look at bloodflow, with no success."
He said his research into strokes intersected with MS research during the 1990s when he started looking at the development of the cells that form myelin, the fatty sheaths around the axons of the brain. Damage to the myelin sheaths caused by immune cell attacks is the commonly accepted cause of MS.


Article: Munschauer is leaving neurological institute
Article from:Buffalo News Article date:January 27, 2010 Author:Henry L. Davis
The chief of the Jacobs Neurological Institute in Buffalo is leaving to become vice president of U.S. medical affairs for Biogen Idec, a pharmaceutical company best known for its multiple sclerosis therapies.
Dr. Frederick Munschauer III, an authority on multiple sclerosis and such vascular diseases as stroke, also is chairman of the University at Buffalo Department of Neurology.
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