Wednesday, February 02, 2005

In October 2002 I was diagnosed with MS. I was devastated but now most of the time I don't even think about it. Denial is a good thing. If I woke up everyday and thought to myself "Crap, I have MS." I eventually would stop getting out of bed. I have fatigue, numbness in my toes and memory issues mostly dealing with word recall otherwise I am quite mobile. I go dancing and volunteer every other week at an avian shelter (I also work full time). For about a year I tried taking Rebif, an MS modifying drug that I had to give to myself three times a week by injection. Eventually the pain and stress of it made me stop. I decided to start writing about my life with MS because I started a new drug two weeks ago. This drug is called Tysabri, it's extremely new to the market and very experimental. I thought it was important to document my experiences with it because there are so few people out there using it and publishing their experiences with it. I hope this helps someone. I know it will help me.

Tysabri is administered by infusion. You go to the infusion room at the clinic, they hook you up to an IV (it feels like getting chemo) and you sit there for an hour while they pump this drug into your veins, then they give you a saline bag which takes another half hour. I had no reaction whatsoever to it. I left feeling fine. It's been a couple weeks and still no reaction or change. My fatigue is just as bad but I'm not supposed to have hope for it to change. I'm supposed to have hope for it to slow the disease progression down. I have hope that in ten or fifteen years I won't be in a wheelchair. (I imagine my parrots fleeing in terror of it).

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