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11-06-2011, 11:42 PM
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Hi Sally, thanks for checking in and asking! I love my Tysabri. I haven't had a relapse yet since my diagnosis in Sept. 2007. I started Tysabri in June 2008. I attribute my quiet MS to the drug. I feel fortunate --tested negative for the JC virus antibodies. But I saw my doctor last week and it has been 6 months since I got tested. He wants me to have a second test. I have to confess it scares the crap out of me, to have it again! If I do test positive this time (either because the first one was a false negative or because I actually caught the virus since then) I will be switching to Gilenya. The negative test gave me such incredible peace of mind. I stopped worrying about PML and stopped scouring the internet obsessively for Tysabri updates. I don't want to go back to that.
Cheers!! 
__________________
On Tysabri and love it. . |
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11-07-2011, 05:21 AM
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Magnate
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Hiya Sal!
Still doing well on Tysabri here, for me, it's still a miracle. No new lesions, no enhancing lesions, no further disease development. I still say if it had not been taken off the market back in 2005, I wouldn't have any residual symptoms! I still deal with fatigue and spasticity, but they are mostly controlled with Provigil, baclofen and tizanidine. My doc keeps me well stocked in all of the above. Tested twice for JCV antibodies and still negative, so I am not concerned any more than I was before I was tested. I'm sticking with Tysabri. No side effects, no problems, no concerns! Headed for # 60 soon!
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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11-07-2011, 11:18 AM
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Hi Sally, even tho I tested positive 1 year ago I decided the benefit outweighed the risk for me. The MRI I had a few weeks ago showed no new or enhancing lesions. My balance, fatigue and endurance has all held at better for almost 5 years and thank G-d progression has halted. My new neuro at the RMmsC agrees with me staying on Ty. As for side effects; none! I've been on the med for 5 years 2 months, my sx started diminishing between 4-6 months-my R-leg did not get better but, I went from 2 canes to 1.
I was tested again last week for the stratify trial. I asked why they will continue testing me since, I was positive. He said it may have been a false positive-wouldn't that be lovely Thanks for being nosey  Linda |
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