Quote:
Originally Posted by Kitt
Yes, CMT aka Hereditary Motor Sensory Neuropathy (HMSN) is hereditary. There are many types of it and they are finding more all the time.
Symptoms can become evident when you are young, old, or in-between. Or they may never be that evident but you can still pass it on. There are "rare" mutations (spontaneous) but this is rare.
There are 22 + types of CMT that they can now test for. There are 50 types identified so far and there is no end in sight. If you do have testing done and it shows that you do not have CMT (at least for the types that they can now test for) does not mean that you do not have it.
Testing is very expensive if you have to have the whole panel of tests done. I believe Medicare does pay for the testing.
As far as chemotherapy, Vinicristine is one that a CMTer should never have. It can raise havoc. Even people in the general population can have big time trouble with it. But, as I said, someone with CMT should never have Vinicristine.
Hope you find the answers.
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Kitt,
Thanks so much for the insight into CMT. I will put this first on the list of neuro tests to have. Not one of the many neuros I've seen ever suggested testing for it.
Thank God I didn't have Vincristine. I had taxol & carboplatin but the taxol was so toxic, I had to stop after only 5 treatments (supposed to have 6) since I ended up in a wheelchair after the 3rd or 4th dose.
Thanks again for your help and good wishes.