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Member
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Join Date: Jan 2008
Location: Southern California
Posts: 308
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Member
Join Date: Jan 2008
Location: Southern California
Posts: 308
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Thank you again!!
Thank you again everyone!
River - are you currently taking Tysabri? I went back and read the first few pages of the Tys board...I think I remembered reading it all thru in the beginning - when I found this place...just needing to refresh my overly hole-y brain! How's the tys going for you? what # are you on?
When you said that you went in front of the FDA to testify - it was to have Tys re-released, right?
Av8r - from what I read on another thread - you are in the study for Tovaxin/TERMS? How is that going? I was looking into that - and think I might try it *if* Tysabri doesn't work for me. My big fear with a study is that I'd only get the placebo - and that just seems risky to me. But I figure it is just a 6month period where I wouldn't know for sure...then a year of open-label. Anyhow - how long have you been participating in TERMS? Is it once a month? Does it involve more than a day? Closest center to me isn't so close - but I have a good friend who lives in Berkely - and it's only an hour flight for me - so if this all looks promising - I might strongly consider it. I just requested info about it. Can you share with us your experience so far? How many treatments have you had so far?
Thinking of that post about worms. Would I do it? If the results were promising, yeah, I'd have trouble actually getting it into my mouth (bad gag reflex here)....but...well....I would do it. Have already made the vow that until I know there is no hope (for me in my situation), I will travel the world and try anything. This MS crap isn't going to take me down. nothing I have experienced in my albeit too long yet short life has taken me down - and as of now until I have further proof that it is hopeless for me - I am not letting MS take me down. That doesn't mean I don't often feel like waving a white flag - it just means that the flag is there - it is always an option but one that doesn't need to be activated yet. Worms don't sound do bad. Besides - it isn't even a needle!!
Besides - couldnt we dope ourselves up before chugging them down? 
Then throw it in a fruit smoothie and suck it up!
I'm feeling goofy. Should really be prepping myself to deal with infusion centers and neuro tomorrow (re: authorization from BS). fun fun!
~Keri
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