It's been a year since this topic has been updated. Thought I'd say that since then, I did get treated for CCSVI (4x to be exact) and am now ready for another campath dose. Yes cam path made me feel pretty bad for up to 3 months afterwards but then it goes away and life goes back to "normal" The stents continue to hurt (bilateral int. Jugs both stented and balloons everywhere else)
CCSVI was exclusionary for the campath trial, but somehow, with my amazing neuro and diligent phone calls, I will be allowed back in. Tomorrow, in fact. 3 days, 12.5mg.
Between the 2 treatments, it seems like it slowed progression. I can still walk (very uncoordinated & not for long distance). As for all the other treatments, I choose campath because it's once a year, has good principle behind it's mechanisms. My brain MRI has been stable, no new lesions. But my spinal MRI has 1 new active lesion. The Genzyme/ care ms study does not call for any spine mri's. So I find that a little deceptive in their study reports showing fantastic percentages....they are only looking at 1/2 of the central nervous system!
All the best to my fellow MS-ers .