Saturday, August 16, 2008
I got a letter from my doctor last week saying 2 more people have been diagnosed with PML as a result of taking Tysabri. This was a huge blow. I spoke to my doctor on Tuesday the day of my third Tysabri infusion. He told me he wanted me to take it for another 3 months and then make a decision. I really don't have any other options. Avonex wasn't working so he doesn't feel going back to the drug will be that beneficial. He told me 3 lesions developed while I was on Avonex, one lesion developed on my brain stem a very bad spot to have a lesion. I also had 3 relapses while taking the drug. I am not sure what I am going to do. I really don't have any options until more drugs are FDA approved. Going off all medicines is not an option either. I want to be able to walk in a year. My doctor says I have a very aggressive case of MS and I need to stay on medicine if I plan to walk in 2 years. Well this is depressing so I will write later.