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

Postby Rosegirl » Sun Feb 28, 2010 6:35 am

Perhaps the way to proceed is to forget about CCSVI as an issue related to MS and just treat it as a vascular problem. Haake said in Hamilton that doctors who find blockages in veins need to treat the blockages. So even our pro-CCSVI doctors are thinking outside the box.

So let's deal with CCSVI -- for now -- as a vascular problem. That will provide treatment for those who need it. And it may turn out that the vast majority of people who need it just happen to have MS. This gives us a mechanism for getting treatment while providing material for an on-going study of its relationship to MS.

Unlike an earlier post here, there is a big difference between how veins and arteries work. Veins are, among other things, more elastic. That alone is one reason to be concerned about stents that may migrate. This also makes angioplasty preferable because it is less invasive.

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Postby Zeureka » Tue Mar 02, 2010 2:47 pm

Rosegirl, you hit the nail! This is what I'm currently doing in Italy.

Just go in hospital for an angiological visit for a jugular valve words on link to MS (although think when went to check appointment and said the word "jugular" to have discovered a smile on their face...but that's positive! ). Decided at last neuro-visit: no words to my neurologist on my seperate medical problem and appointment :wink: (in same hospital, haha!).

And lets see what the vascular specialists will say and think to know how to treat it then. Maybe they only repeat the doppler (I was told they will), and might say cannot do more for now, or maybe not...
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Postby fogdweller » Tue Mar 02, 2010 4:20 pm

Steinman would like to go directly to a human trial to test his proposal, but there are practical difficulties. "Who's going to pay for it?" he asked. A standard proof-of-concept study with about 200 patients would cost in the vicinity of $20 million. ACE inhibitors are as inexpensive as any prescription drug at this time, so pharmaceutical companies won't see any profits from financing a study, he said.

True for drug trials, way off for medical device trials, and way way off for diagnostic trial. no need to secure experimental drugs of high quality in small amounts, treat and follow patients, usually for years, and all those other factors that make the drug trials so infernally expensive. The Buffalo trial was 500 patients, took place in three months (!!!) and cost a total of ... I am not sure but I think the whole larger trial is 3 million? (Someone corrrect me on this.) And that is a thousand patients.
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Postby Sotiris » Thu Oct 21, 2010 10:11 am

Wichita wrote:Does anyone have a link to the article that Ashton Embry is refuting, entitled "Cerebrospinal Venous Insufficiency and Multiple Sclerosis (Khan et al, 2010, Annals of Neurology)"?

A preprint of the paper can be found here:
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