This Is MS Multiple Sclerosis Community: Knowledge & Support
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I just had a call from the BNAC about 1/2 hour ago. They wanted more information for my application for their CCSVI diagnostics package. They are moving right along with CCSVI business. I think the "on hold" problem was just growing pains because the woman who called me told me they are gearing up and scheduling doctors and making phone calls !!! I don't have a date yet, but of course I asked about that. I was told it would be anywhere from 2 weeks to 2 months. Now I am excited all over again.
Thanks, magoo !! I've had 2 potential scans postponed/cancelled so I feel like I have been on a roller coaster. This one WILL WORK OUT !! And I feel confident that BNAC is the best place to go, aside from Dr Zamboni and Dr Dake.
Seems they are pressed by Neuro community to refrain from calling it a diagnostic. I am afraid next step will be the cancellation of the testing. Has anyone more news?
Apart form the diagnostic, the Combined Transcranial and Extracranial Venous Doppler (CTEVD) study is supposed to be presented in April with the FULL results of the first 500 people. Any information about this (exact date). And what about the next people to be enrolled? already started?
I don't think there was pressure from the neuro community to not call it a diagnostic test. CCSVI is still in the research mode and the word "diagnostic" implies a general acceptance of CCSVI as an accepted condition. BNAC is still going to be testing people and will be giving us our results. But they are now calling it an open label trial. The results of all the people tested can be considered research. We will get our "results" (ie of the doppler ultrasound and MRI/MRV). We won't get a "diagnosis". All these words are fraught with meaning for doctors and researchers and everyone involved must go forward very carefully.
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