Body Betrayed | Body Disabled

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Thursday, December 3, 2009

First Appointment with Dr. Jun Li

I have been blessed to have excellent doctors at Vanderbilt. Dr. Christopher Lee consulted with Dr. Jun Li and set up an evaluation for me in Dr. Li's CMT (Charcot Marie Tooth disease) clinic. Dr. Li is well known and recognized as an expert in heredity neuropathy. Medical and family histories were taken. The neurological exam was extensive. The entire visit took over one hour.

I still had a wide variety of progressing symptoms. Dr. Li thought several neurological disease processes were taking place at the same time in my body. Since the genetic test for CMT-II was negative, and since my exam was not fully consistent with CMT, Dr. Li did not believe CMT was my major problem. I could possibly have some rare type of CMT, but not likely.

So, if my condition is not CMT, what is it? The EMG/NVC testing suggested Acute Motor-Sensory Axonal Neuropathy (AMSAN), also known as Axonal Guillain-Barre Syndrome; a rare variety of GBS. I had indications of small fiber neuropathy, autonomic neuropathy, and a variety of other neuropathies. It was possible I had an unique variety of Myasthenia Gravis.

It was clear I was not suffering from a normal case of peripheral neuropathy. In traditional peripheral neuropathy, the pain and sensations are usually limited to the legs and hands in stocking and glove distribution. My entire body was effected, which is way outside the norm. The next step was to repeat the EMG/NVC and look for other changes and other disease indicators.

Both Vanderbilt neurologist found it very interesting that my mother had Guillain-Barre (GBS) and I was exhibiting similar symptoms. There may be some genetic disposition in my genes that caused this. Since GBS can be triggered by a vaccine, there may be a connection to the tetanus shot in received in April 2009. There is no way to know for sure.

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