The BS of my MS

I was diagnosed with Multiple Sclerosis April 11, 2006. It was a fairly quick diagnosis and there are days/weeks I can mostly ignore it. For those days I can't, this blog documents my journey.

Tuesday, February 23, 2010

Armed with Questions

The doctor fit me into the schedule for this week. He told them to overbook him, which I appreciate. I am going to see him tomorrow.

I have a few questions I want to ask. First of all, I am taking the article I cited yesterday with me to ask him his thoughts on it. Regardless of his thoughts, I am pretty convinced that I am being affected by whatever Tysabri did to folks in the study who were in a highly-active exacerbation. There is no explanation as to why one day I am getting Tysabri and the next day, my walking and balance is a lot more off; why I am getting weakness in my legs and back. I went from walking kind of slow to walking very slow, uneven, unbalanced, and contemplating a cane; it is not right.

I also want to ask him about steroid use and Tysabri. They do permit you to have IV steroids to treat an exacerbation during Tysabri. When I called their Touch Program and asked questions, I was told that they try to avoid anything that puts extra strain on the immune system. However, if a doctor sees IV steroids as the way to go, then he/she can prescribe them.

Steroids have their own risks--including hip necrosis and osteoporosis. My doc has told me that my size (to put it bluntly--I'm fat) is a positive factor in me avoiding osteoporosis. However, hip necrosis is still a risk. I've had steroids probably 4 or 5 times since April 2006, including my last round in July 2009. I don't want to use them again.

I also do not want to restart Tysabri in the middle of an exacerbation. The article talks about peoples EDSS (a disability scale) numbers getting worse after the exacerbation triggered by their Tysabri infusion. Yet, I am also scared to be on nothing at all. My MS has been aggressive in the relapse phase. I am remitting well, but I relapse a lot. And I've not been 100% since July 2009. Seven freaking months.

So, I am going in with lots of concerns and lots of questions. I trust my doctor, but I also trust my own ability to research as well as my instincts. There really is so much to consider.


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