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


Postby Mocha » Wed Dec 23, 2009 5:47 am

I remember when Tysabri first came on the market a number of years ago for the "first" time.

Since I’m basing this assumption on my MSy memory, it may not be 100 % accurate. Please correct me if I’m wrong (unless it’s my wife or my mother-in-law reading this post.....the only two people from whom i will not tolerate being do realise I’m joking...right ? :D )

It seems to me that the results (of the Tysabri study) were so conclusive and that so many people were helped, that the FDA in the States, and other Health Boards from various counties, fast-tracked its application so that people could benefit from this treatment....then people started to die....they removed it. They brought it back as a mono-therapy, and fast-tracked it again.

If this is true, why can`t they fast-track diagnosis and treatment of CCSVI ?

Am I correct in being "suspicious" of decisions made by health authorities ?

Thanks ! Comments, corrections, misinterpretations (on my part) can be submitted, and are more than welcome.
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Postby ElMarino » Wed Dec 23, 2009 6:07 am

If Zamboni's findings are replicated I suppose that the treatment has still to be approved by the FDA and other regulatory bodies. But I don't think that it will require fast tracking since angioplasty isn't an unkown.
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Postby sbr487 » Wed Dec 23, 2009 8:02 am

Tsyabri was probably different on 2 counts:
1) No one (I mean doctor) was losing his territory due to it
2) It was one pharma against another (tsyarbi vs other drugs)

Things have changed in case of CCSVI. Unfortunately for people like us, Neuros are generally the most decorated among dr community and are very slick. Combine this with the money power of drug companies.

Now who is left out,
1) the ms societies: I think already a lot has been said about them.
Some were sleeping and some pretending
2) policy makers: the least said about them the better it is, not to mention the fact they might even have a biased doctor as their core consultant team
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Postby Johnnymac » Wed Dec 23, 2009 2:20 pm

once the buffalo studies come out independent verification is done I think you'll see more IRs be willing to diagnose and treat CCSVI....apart from MS
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Postby HopingHusband » Wed Dec 23, 2009 9:10 pm

Johnnymac wrote:once the buffalo studies come out independent verification is done I think you'll see more IRs be willing to diagnose and treat CCSVI....apart from MS

Don't forget the Study being done in Vancouver, Canada at UBC, which replied to us saying they should be ready in approx. 4 mos for a full Case Study.

P.S. Johnny, like you signature.
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Postby Vhoenecke » Wed Dec 23, 2009 9:32 pm

Also Saskatoon Saskatchewan is doing the study with UBC. funds could be directed there. Unlike Buffalo they will be sharing the information.

Saskatoon City Hospital Foundation

The MRI Institute for Biomedical Research

Cameco MS Neuroscience Research Centre (site currently under construction)
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