Body Betrayed | Body Disabled

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Tuesday, October 27, 2009

Second Appointment with Vanderbilt Neurology, plus EMG/NCV Study

Dr. Lee and I had several email and phone conversations since my first visit on July 13, 2009. We had arranged for my checkup and additional testing to be done on the same day. I met with Dr. Lee in the morning. He was well aware of my current symptoms and was uncertain about just exactly what was happening to me. I had a constellation of symptoms which matched several disease processes. I could have one new disease or a combination of several.

I had educated myself about a lot of neurological conditions and was able to ask him several important questions. Although my symptoms were progressing, there were no indications of a disease process that would quickly take my life. Great!

Until we know what we are dealing with, there is no way to treat the cause. So, I continue with the new medication, Effexor. We hope that the EMG/NVC test this afternoon will shed some more light on the subject.

The EMG/NVC test was almost entirely painless--that was odd since the needles they use for the test are over two inches long and they stick them all the way into your muscles. I was tested in over a dozen spots all over my body and I only barely felt one stick. That's good and bad!

The results of the EMG/NVC come back as follows: The EMG is most consistent with a neuropathy, and the "axonal denervation" is a feature of neuropathy as well as other problems. We have ruled out many causes of neuropathy, and there are quite a number of cases, maybe 40%, where we don't find a specific cause. Symptomatic treatments like the gabapentin (not in your case) can be helpful to treat pain, but weakness and numbness are usually much tougher to treat. Several things about your circumstances suggest to me there could be a genetic cause - never being able to run particularly well, the region of changes on your EMG.

During my visit with Dr. Lee, we also discussed the possibility that my problem may be genetic. I had the foot structure of someone with type II, Charcot-Marie-Tooth disease. Charcot-Marie-Tooth disease (CMT, named for the three doctors who first described the condition) is one of the most common inherited neurological disorders.

Genetic blood testing was ordered and performed. There are several types of CMT and since the testing is very expensive, we tested for the suspected type; CMT II.

The CMT test would eventually come back negative. But, that does not mean I am free and clear of CMT--not all genetic markers are discovered yet. I would need to be examined by a CMT expert for definitive diagnosis.

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