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Member
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Join Date: Feb 2008
Location: Erie, Pa
Posts: 107
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Member
Join Date: Feb 2008
Location: Erie, Pa
Posts: 107
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Hi Cherie,
I didn't know about TY not doing anything for spinal lesions but I am getting scared now AGAIN........
Yesterday I was at the hospital getting an MRI and for about 5 minutes I lost the use of my upper body, my arms just would not work, it was a weird thing but then as fast as things stopped, it all came back but very WEAKLY, my arms DID work but were so weak I was shaking just holding them up........I went had my MRI and then everything went back to the way I have been with just weakness and numbness, it was scary, I was just about paralyzed from the waist UP...........SO things are still screwed up.......I am thinking that I am never going to get back to normal, or is THIS my new normal??
Joe
Quote:
Originally Posted by lady_express_44
Funny how you said "100%" better, since you are probably still a long way from normal. BUT, I get what you are saying because you could live with this result (begrudgingly), and THAT (July/early Aug) was 100% unbearable. 
I had some very down periods at that time too, Joe, and you are right that you will bounce back. When coping with your body is all you can manage, everything else that goes on in life just compounds incredibly.
That buzzing is L'hirmettes. I had that for many months after the first attack, but it did go away eventually. I have had it permanently since 2003, but it is very slight compared to what I have experienced DURING the attacks.
Again, steroids are not known to help spinal lesions . . . but if it makes you feel like you are doing "something", then so be it.
As far as Tysabri, I have read on other forums that those with mostly spinal lesion activity do not seem to get the same benefit as those with mostly brain lesion activity. That's just anecdotal, of course, because to the best of my knowledge they have not scientifically tested Tysabri on the various segments (spinal vs. brain). If it is true though, the good news is that Tysabri might be even more effective for brain lesions (then what is "advertised"), because the spinal lesion patients from the trials would have dragged down the overall stats.
I assume you are well informed of the risks for PML and other opportunistic infections with Tysabri, as well as melonoma, rebound effect, liver concerns, etc.? Those risks are low, but should be weighed up.
Some people claim Tysabri has helped their Quality of Life, through improved symptoms . . . not to mention reduced # of relapses, and reduced disability progression. Like all the meds we try, it seems to work very well for some of us, and not at all for others. I hope it is your ticket. 
Cherie |
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Dxd RRMS 12/23,06, Copaxone 2/07 to 9/07 - Rebif 10/07 to 7/08, BAD flare with Transverse Myelitis & Pancreatitis.....,9/08 Pseudo Cyst!!!! and another TM attack. Started Tysabri 9/22/08 - 10/21 Allergic reaction to Tysabri, SSDI Approved 11/14!! Continued Ty 11/17 with a Pre-medicate. Solumedral 12/11-12/13 Ty #5 Jan 12th!
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