Quote:
Originally Posted by Susanne C.
I know that we are the only regulars on the site with CMT (yes, we do have type 2 which is rarer and gets less attention than 1a from researchers)
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Yes, CMT2's depending on the type are rarer than CMT1A. However, they are doing research on some of the CMT2's as well as the other subtypes of CMT1. And some of the other types of CMT as well are being researched. I believe one reason that CMT1A gets a lot of the research is because it is one of the most common types of the disease and therefore more CMT people have it than the other types.
I do agree with you that there are people who come on here who very possibly do have a type of CMT. But it's never confirmed. The diagnosis is usually just idiopathic, or some such thing, which means the doctors don't know what they have. These people probably need further testing, expensive, look at their family history, and see a neurologist who might know something.
Thanks for your post. I do agree with your last statement as well.