I've never been completely comfortable with this treatment and Mom is fully aware of this, as is Dr. Short. I will confess that one of my main incentives for continuing with Tysabri has been a less than noble one. I learned after the first infusion that a private insurance policy I have, called Hospital Income, would pay me $100 each time I underwent treatment. I've had this policy for many years and it has come in handy whenever I've been hospitalized with MS problems or for anything else but I hadn't even considered being paid for the Tysabri! Being as broke as I am, $100 extra in my account was a large amount and allowed me to pay for, at least, my Jinger's monthly hyperthyroid medication. When I mentioned this to my mom on the way to my appointment, she was visibly shocked. She had absolutely no idea that this was why I had chosen to continue with a questionable treatment I was really not in favor of being on. The way my mom is, she didn't tell me to stop taking it immediately as this was a ridiculous reason to stay on it, but said that I needed to really think about what I thought was best before continuing with it.
When I was called in to see Dr. Short, we talked for a few minutes and I mentioned how I wished he had brought up the TENS unit a while back as it has been helping me quite a bit and has lowered my pain from an 8.5 or 10 down to a 7 on most days. That's quite a bit of improvement as I can function much better now. I then spoke with Dr. Short about the Tysabri. He wasn't surprised at my apprehension to continue but then I mentioned how one of the inventors of Tysabri had been opposed to the FDA approving it. This in itself should make ANYONE apprehensive to take it or recommend it! But it wasn't even just this that led me to my decision. I have know that Tysabri can lead to the deadly PML virus (lethal brain infection) but I'm at a point in my life where I am at peace with myself and my MS. If Tysabri had been available 15 or 20 years ago, death would not have deterred me from taking it but I am not that same person anymore. I have too much to live for! I have my wonderful, kind, loving parents. I simply adore my three little kitty daughters and can't imagine a day without them. I love my brothers. I love my extended family, even though I am not able to see them, but I know they are there and know they love me, too. I love all my friends! Life is good! Why would I want to risk my life over a medication that may or may not help me when I am only slightly disabled compared to how horrible it really could be? I would rather take my chances with the MS and face it head on than hide behind a drug that could potentially make me worse or kill me. I'm worth more than that. So all this being said, I did not continue with my scheduled infusion and will not receive any more treatments.
I'm including the article I read, which helped me reach my final decision.. although I believe I would have come to this conclusion in the end.