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Is Tysabri really as scary as I think it is? Help

Posted: Sun Jan 02, 2011 2:43 am
by cassy
Hi Everyone,
I really need some advice from people who actually know what I'm going through. I feel like I,m in hell. I am in a rotten horrible relapse,the worst I have had in 6 years. I have tried Betaferon and Copaxone for the past few years and two weeks ago I relapse so bad I can't even piss on my own now. ( SORRY VERY FED UP). My problem is my Neurologist is saying that Tysabri is the only way to go now. But I'm scared,people are still developing PML and dying.What should I do? Is there anyone else out there in this position? Should I just go for it and hope that this is the treatment that will work for me.
Really need some advice.
Happy New year to everyone.
Cassy

Posted: Tue Jan 25, 2011 2:50 pm
by EyeDoc
I was scared to start Tysabri as well, but I had my 1st treatment earlier this month.

I am going downhill. Slowly (not slow enough) and surely downhill. I have been on other meds to no avail. So my choices were 1) do nothing 2) take meds that have proven ineffective 3) take Tysabri.

What other choice did I have? I started Tysabri. At least there is a little hope again.

I have a very good friend that is a neuroradiologist. He concvinced me by explaining that the incidence of PML is less than problems caused by everyday medications that people take for granted like high cholesterol meds, etc.