Junior Member
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Join Date: Dec 2010
Posts: 22
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Junior Member
Join Date: Dec 2010
Posts: 22
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tested positive
hi all - I just got my 6th tysabri infusion; it's my first one since I found out I tested positive for the JC virus.
I was diagnosed 3 years ago and had 2 relatively minor flares with just sensory symptoms but had a pretty major post-partum flare for most of 2010 that peaked with swallowing problems and other scary stuff in the summer.
As a longtime HIV/AIDS activist, I know people who have died of PML (it was still relatively rare but more common in the days before effective anti-HIV drugs, when people became very very immune suppressed). I'm staying on the drug for now, but will be looking for alternatives at the 1 year mark or so.
I still have (maybe permanent) peripheral neuropathy in my feet and legs from the flare, and get my first MRIs since starting tysabri in a few weeks.
I'm wondering if anyone has ever seen statistics that look at women who had their most major or only flare as a post-partum one, and how many of them continue to experience major flares and/or progress to SPMS, and how many go on to not have flares if they don't have other children??
JD
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