Thanks for your posts - both here and on the Tysabri forum - you've certainly voiced the hopes about CCVSI and concerns about waiting that many of us feel. I'm in the same boat as you as far as using Tysabri as a stop-gap measure, and wondering what to do next: I'm off Tysabri after 27 infusions, sort of an informal 'drug holiday'. In your last post you seem to be saying that you've run out of options. I'm curious about your opinion on shutting down the Tysabri, and trying to get Campath (after a drying out period). Has your neurologist discussed this with you? Any perspective would be helpful.
You're welcome, I'm not sure yet if my ramblings have any theraputic value !!! Most likely not haha
Yes, am I ever hopeful regarding ccsvi... I just got an e-mail today from Stanford.. They're working on a clinical trial (you probably already heard), which may require a longer wait, but probably the best for all involved.. Prob. alot less liability for them and I'm sure we'll literally have to sign our lives away to get in...well worth it, in my estimation. In the long run, the continued gathering of data, and possibly perfecting a procedure will be invaluable.
As far as TY goes, I need to correct my previous post... I've been on it since 10-2006 not 2007... My doc took me off after 26 infusions (2yrs) and sorta left me hanging (no treatment at all for 6 months) and my symptoms worsened fairly quickly. I liked the convenience of not having to go in for the infusions, but really started feeling like crap. The only consolation, was that TY appeared to be working, but didn't really realize until I stopped.. I guess a bunch of PT's complained, and the higher-up's got wind of it and gave him some crap about leaving us all hamging.. I practically begged to be put on anything, so he finally put me back on.. I really don't know which way to go treatment wise at this point... I could stay on TY and wait for the ccsvi clinical trial to start up and hope I don't get pml .. or look for something that could potentially benefit the vascular system, like Lisinopril? I think some are waiting 60 or more days washout before starting anything new.. mine wanted a year. Sorry I'm not much help to you, as I'm not sure which way to go either.. my neuro sucks so bad so I can't rely on his help... Campath is pretty powerful stuff too...