Pink2010 wrote:I have tried to get my neuro to take me off tysabri since the first year I was on it. Each time I am told no. Each time I tell them I am sick in bed over 95% of the month; I am told "you will be just as sick with another drug". I don't care! I have constant lung infections and the antibiotics now are all worn out. They no longer work. I want off this drug. I know exactly how I intend to manage my MS, but I can't do it while on tysabri.
I was to have had the liberation treatment for ccsvi 3 weeks ago, but had to cancel because of illness. I have not been able to go to a school play due to infection risk since 2-08. I can't go anywhere with out a mask. I want a life while I still have a chance at one. This drug has taken all my choices away from me. I want to be able to make choices again. No one told me about rebound before I started. I am now at #33. I guess I'll be at 40 soon. I see no out.
Any help here would be very much appreciated. I do believe there is a 44% chance of rebound as I went into a flair at 3mo off last year and had to go back on. BTW, it is said that what ability you lose in a rebound flair one will not get back. I believe this to be true as I did not get back what I lost. So much for me trying it alone. I need your help please!
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