Thursday, November 01, 2007

Spinal Progressive MS

I know lots of you were thinking and praying and fasting for me today and I thank all of you so much. It helps me so much to know of everyone who is supporting me.
I met with my neurologist today and he confirmed what I had already been suspecting, which is that I don't seem to have the "normal" recurring-remitting MS (not that any form of MS is normal), but that I most likely have the primary progressive form, what he calls "spinal progressive," since it involves mainly the spinal cord. There are a variety of reasons this seems to be the correct diagnosis. I had pretty much come to it on my own through research I have done, so it wasn't a bolt out of the blue, which is a good thing.
So the question now is what treatment to pursue. There are a few options to me, a couple of possible drug therapies, perhaps participating in some clinical trials. My neurologist will be consulting with some neurologists in Dallas and Houston to determine wha the best course of action will be. This is the rarest form of MS so there is a lot that is unknown about what treatments may or may not be helpful in my case.
It was a difficult appointment to sit through. It's hard to hear that this disease *will* put me in a wheelchair within a few years. It's hard to hear that the only two drug therapies currently used for this form of MS are chemotherapy drugs-- Novantrone and Cytoxan, one which may not cause me to lose my hair, but which does cause cardiotoxicity and can't be continued longer than a couple of years, and the other which *will* cause me to lose my hair and give me nausea, mouth sores, and all those other fun chemotherapy side effects. I'm hoping there will be some promising clinical trials.
But I did get a prescription for some antispasticity medication which will make it easier for me to walk, at least for the short term.
I am really, really glad that I found this doctor. He talked with us for more than an hour. I trust him and I know he will do his best to come up with some good options for me. He is so much better than the doctors I had in Miami. I don't know how this whole process would go if we were still out there.
I am doing ok. This wasn't unexpected. It feels a little unreal, but I'm sure that's normal. I don't know how Ben is taking it, I hope ok. He put up a strong front for me at least. I'm sure it is not easy for him to know that he will be taking care of a disabled wife for the next 50 years.
I am sad for what this means for what I hoped I could do and be as a mother and wife. I will have to revise some things, that is certain.
But at the same time I know how fortunate I am. I have a husband who makes a good living and allows me to be home with my kids. I don't know how I could do this if I had to work outside the home. I have 3 perfect children. We have medical insurance which will pay for my treatments. I have a disease which is not terminal. Many, many people live fulfilling, wonderful lives in a wheelchair. I have the best support structure I could hope for.
And I have a month to mull things over, do some research, pray, and get a feel for the direction we should go from here. It's nice not to have to make any major decisions right this very second!
I know some of you out there tend to worry a lot. Please don't! Worrying won't change anything. Everything will be ok. I am ok and we will all adjust!

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