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U of M and spasms


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Hi! Yesterday I drove to the University of Michigan, about 2 hours from home, to have one of the sharpest Neurologists in the industry, hear my story and offer me hope. For the first time in 3 years, I feel hope for my future.

He listened intently. He had a medical student with him who wrote notes furiously, and listened to his mentor intently. That charmed me that this very learned man cares so much that he teaches as he doctors. He checked me out throughly, and ordered a huge amount of blood tests.

I didn't understand a word of what he said for possible diagnosis's, but what I did understand is that there is a diagnosis, and he is going to find it. He said it is likely as a result of the side effects of the chemo or steroids.

So he started me on Dilantin, which is an anti-seizure medication. I was sadly familiar with it because my Mom, Dad and Sister all took it for seizures caused by the cancer tumors in their brains. I'm to take one a day for seven days, then two a day for seven, then three a day for seven, and then stay on four a day. I'm to do this for a month, and then in November, head back down for blood test results and to see how the Dilantin worked on the spasms.

He said this is not a drug for long term use as it has some nasty side effects. But he felt right now the side effects are less ugly that the horrific pain I'm in.

The spasms has progressed to the point that I can not sleep more than two hours without springing out of bed, writhing in pain. They rack me through out the day on and off for no apparent reason. Some days I'm doing great, and then bam! With no warning, I'll get an attack. Other days I can feel the tightness in my muscles, and that is a precursor of what is to come.

So, I am at peace that I finally am with the right doctor, and that he is going to dig until he finds the problem. Until now, every doctor has shrugged his shoulders and said "I don't know". This one said "We will find the problem, and we will solve it." That gives me huge peace as I deal with this pain.

I'm not going to sit around the house waiting for the pain. The pain will be there whether I sit or move, so move I will. I have things I love to do, have a passion for, and I'm going to do them.

I guess, all I can say, is that I lean on my Faith and my God for my comfort as we work through this. I know he does not want me to suffer, and he has led me to this amazing doctor. That is so awesome, I'm fairly dancing around my computer as I type this!

Judy in MI

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I forgot to add this. He did say the "C" word. He said he'd know more after the blood tests, but that a biopsy on my muscle tissue may be in my future. He said there are cancers that attack the muscles, and that he may have to rule that out.

To be honest, I don't care what the diagnosis is, I just need one that helps me understand what this is, and medication or other supplements that help the pain go away. That's all. Just have the pain go away.

Judy in MI

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Judy ... I so hope the frustrating months of no answers is soon coming to the end. Your new doc sounds fantastic and I trust he will have you pain free in no time. I cannot begin to imagine what you have been going through with the pain ... it sounds horrible. Keep us posted on what he comes up with and hang in there.



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