Sunday, November 11, 2007

Tysabri & Me

Maybe I should have started this whole subject with a disclaimer, so here it is: I am not a medical person and I do not claim to know more about MS than anyone else. I am merely your average lay-person who needs to know everything I can about the disease that dictates my life, therefore I appreciate all your comments and feedback because they help me research areas that I may not have looked into as much as I should have. I am not saying the way I get Tysabri done is the right way, I am just putting this information out there in case it could help someone. I can understand why some people would not like someone doing Tysabri other than what is recommended--I do not want to be the person who gets PML and takes Tysabri away for good. I too am afraid that someone will get PML and we will lose this manna from the gods that is Tysabri. My neurologist and the infusion center I go to are cutting edge--so much so that people come from several states to see them. They only deal with MS, nothing else, and are one of the best Multiple Sclerosis clinics in the country, hence why so many people want to go there and why it can take months to get in. I said in a comment but will say again here, they do studies and clinical trials so maybe that is why they allow me to dose the way I do, but I am confident that they would not do anything to jeopardize themselves or anyone else. So to get to the bottom of this I am going to talk to them this next week and do some research myself because if I am in the wrong I will gladly eat humble pie and go back to my old schedule of every 4 weeks--if for no other reason than I want everyone to be able to benefit from Tysabri. Whew! I feel better, hope it was as good for you as it was for me.

No comments: