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Grand Magnate
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Join Date: Aug 2006
Posts: 4,440
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Grand Magnate
Join Date: Aug 2006
Posts: 4,440
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The term CMT is properly used to describe a neuropathy that affects sensory and motor axons. Patients with the disease are otherwise well. The designation CMT should not be used for inherited diseases that strongly affect other organs, such as the brain; these are syndromes in which neuropathy is typically an unimportant element (there are at least 100 such syndromes). (CMTA Report).
Again, CMT or the newer name HMSN, is properly used to describe a neuropathy that affects sensory and motor axons. It is most often inherited. CMT is the most common "inherited" neuropathy. It is genetic. There is no treatment/cure yet. Hopefully in the future.
I agree with the explanation of autoimmune.
There are many doctors even neurologists who do not know CMT. They read a few lines in a text book. And why would they know CMT as they probably have never seen a person with it. Or if they have, maybe just one or two. A person definitely needs an expert in the field of CMT. And there are those DNA blood tests which are a great help in determining the types, etc.
Grisabella does seem to have some symptoms that perhaps sound like CMT but she definitely needs to have some DNA blood testing done along with some family history. She also mentioned that 20 years ago CMT was brought up. As I said before, athenadisagnostics does have a program to help with the cost. I don't know how old she is but if she is 65 or more the cost is covered by Medicare I believe.
Hopefully, this information will help some people and those who do have CMT.
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Kitt
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"It is what it is."
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