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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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So sorry...
Sorry to hear you're struggling so much.
Just want to make a few points -
1. As far as I know: Tysabri isn't meant to stop or heal an exacerbation (none of the DMDs do that) though many people report feeling better and lessening or disappearing of sx after the first treatment - however, for some it takes several months of treatments.
2. To help with sx of an exacerbation - usually IV steroids are used. I've had two rounds of steroids in 3 months - I have been in this episode since Dec 22. Both steroid tx helped in the immediate - for 1-2 weeks after...but then my sx came back as well as new ones.
3. There are other tx available if tysabri doesn't work...but I understand your fears - I have them, too. My doc made it seem like ty was my only hope - but the more I read, the more I know that heaven-forbid it doesn't work for me - there are a few other things to try before I give up and call it quits.
I'm sorry you are experiencing new sx - I know how scary that is.
I'm not sure what you mean by last stage and so severe that the next relapse may take you out.... MS *rarely* kills - but yes, your sx could progress to the point of complete disability (bed-bound, etc). I'm not sure how fast that comes on, though, from what I've read it isn't like a train crash - not instantaneous. Also usually the sx need to last at least 24 hrs.... it sounds like you're having spotty sx all around...I have moments like that, too, where I feel numb or weaker in places overall, but it isn't constant.
I suggest letting your doctor know about these sx and ask his thoughts on an IV treatment. It's usually 5-6 days of an infusion - they take about an hour each.
Sheena, from all you've posted - I don't think you're out of the relapse....and from what I have heard from so many people, it is TOO soon to tell if you don't have Relapse Remitting MS. You need to wait and see.... I know, it stinks all around 
I also wonder/think if maybe all of your sx are stronger right now b/c you are so sick - I know you are on antibiotics - but they take time - and often physical illness makes our sx worse - and can bring them out even when they've been gone (pseudo-exacerbation). I wonder if that is what is going - your body is just sick...and needs to rest and heal.
Just my thoughts from all that I've read. Everything is a time game...sit and wait. It stinks.
I hope you feel better,
~Keri
ps/I'm going to try to get to the post office today to mail you that stuff - if not, tomorrow for sure!
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