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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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patientx
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PostPosted: Fri May 28, 2010 5:14 pm 
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ssmme wrote:
patientx wrote:
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Most drug trials (even new ones, like for fingolimod and cladribine) use relapse rate as a primary endpoint. Reduction in lesion load is a secondary endpoint that they measure.


I don't really feel that I've ever had what would be considered a classic textbook exacerbation. It's usually in hindsight that I begin to suspect that what I had been experiencing could have been one. I don't lose my sight then get it back, or experience the MS hug then get back feeling, sometimes my left hand and arm tingle sometimes it doesn't, L'hermitte's sign is there sometimes and sometimes it isn't. How can counting exacerbations be accurate? For the record, I don't believe lesion load is the answer either. There is not a simple way to measure new drugs with either of these methods. But I'm open to here suggestions?


I feel like I'm in the same boat as you; I don't experience what is described as the classic relapse-remitting nature of MS. So I have to agree. It seems these trials use a pretty precise definition of what is considered a relapse. I know the trial I am in is much more stringent than the neurologist(s) who diagnosed me. (And I've bugged them many times when I thought I was in the midst of a relapse).

But Scut's point was that the drug trials don't only use lesion load as a primary endpoint, and he is right. Even though the method may not be perfect, it seems most drug trials try to use a clinical outcome.
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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