Quote:
Originally Posted by judiesva
HI Kitt-interesting question/post about having to see where your feet are. I think I know where my feet are-I really have to think about that-Have a hard time walking in the dark, makes me feel unbalanced. Neuro's first thought was I had CMT-so therefore the testing. I think you might have commented on another post to me before with info about it. I understand that the genetic testing is always improving/finding new forms of CMT-I suppose every year a different sequence might be identified. Neuro is done with any kind of testing. Ran the whole blood gammet-nothing. Oh well, from what I understand at this point, there really isnt any magic pill to help if the cause is any form of hereditary neuropathy. any other hereditary form you can think of that would fit the symptoms of CMT? Starting the gapapentin for the burning, zapping, and all the other fun stuff. Do some people have fatigue from pn? I have been fatigued forever it seems.
Thanks-
J
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Hi, As of 2008 there were over 50 kinds of CMT that have been identified so far and no end in sight. DNA blood testing for CMT thru Athena Diagnostics is very expensive if they have to do the whole panel of tests that they now can test for.
If you do indeed have a type of CMT you need a neurologist who is an expert in CMT to help you. No, there is no magic pill to help. CMT is progressive no matter what you do. There can be a rare mutation of CMT as well where there is no family history, etc. Also, anyone in the family could have been misdiagnosed as having something else. Or their symptoms were so vague that nothing was suspected. Or they could have died before any evident symptoms appeared.
I know of a gal and her brother who could not figure out where their CMT came from. However, finally it was confirmed in their father who was 82 at the time. It was thought that he had Parkinson's disease but not so. Had he passed away before that no one would have ever known where it came from and they would still be wondering.
There are so very many types of hereditary neuropathies so I cannot help you there. Again I am not at all suggesting that you do indeed have CMT. The fact that you have a hard time walking in the dark makes a person wonder though. I do hope you find an answer.
By the way, I do have pain but I live with it; at least for now.