Guest guest Posted March 4, 2003 Report Share Posted March 4, 2003 Hi , I was diagnosed with CMT when I was in my early to mid 40's. I was having difficulty at work (I was an electrician) with my forearms and hands cramping badly and spasming into awkward positions (not a good thing when you have your hands in a live electrical panel). My GP, on a hunch, sent me to have a nerve conduction test done. To the neurologist's surprise (he wasn't expecting to find anything he said) the conduction in my arms and legs were both bad. He referred me to his boss who did a nerve biopsy on my sural nerve in my left ankle. He removed the nerve, preped it, and sent it to the Mayo Clinic in Rochester, MN. Their findings were " nonspecific segmented demyelination of the nerve " . Now, seven years later, I have had to file for SSI disability due to weakness in my hands, arms and legs........poor balance.....etc. I found out today that a decision had been reached two weeks ago on my claim (after waiting around 5 months)...........however, apparently the regional offices randomly pull a case file and review it to check on their local caseworkers. Naturally, mine was pulled and I have yet to hear what the determination is. *huge sigh* My Dad had CMT also, however he and his doctors never knew it. He has passed away now but he had " foot drop " of his left foot............as do I. Anyway......good luck. There is a DNA test that is rather expensive but can tell you if you have the screwed up gene. Bob in Indy Quote Link to comment Share on other sites More sharing options...
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