The Tysabri Journey

I had my fourth infusion of Tysabri today. One side effect is Progressive multifocal leukoencephalopathy (PML), which may cause death. I thought that if you made it through the first infusion and didn’t have any problems with is effect, that it was a mute point. Today I was told I need to get the test to see if I have PML. Just because I have not contracted it yet doesn’t mean I wont. 1 out of 200 people with PML and on Tysabri, could die.

Kind of wish I knew THESE stats earlier. I’ll be having the test next month when I see my neuro, and am having some blood work done this week to check and make sure the Tysabri is not harming any internal organs.

So far nothing seems different. Again, I know it can take 6 months to one to see anything, but I want it now!! If I do not see or feel any difference in the 6 months, I’m done. Not worth all the risks for something that may not help. So, we shall see.

I have said all I expect and/or want from this is to be able to drive again and hold my bladder. Now, with all the risks, I want it all!!! 😛

Love and Light!