Member
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Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
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Member
Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
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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), but a lot of people have come and gone in the time I have been here who gave reason to suspect they had CMT. Idiopathic diagnosis, weakness and fatigue, hammertoes, restless legs, awkward gait, and oh mom had trouble with her feet. I think it is important to suggest to those people that it might be CMT because many of them will never hear it from their doctor or connect grandpa and mom and auntie's leg troubles with what they are experiencing. Some people's parents suffer in silence, and others, like my mother, never stop complaining about what were minor aches and pains.
I didn't even connect the fact that my half sister had leg braces and my aunt had to do "exercises" and my bio father couldn't get out of a chair and drank all day to numb the pain with this for years because they weren't "family", just a shameful secret.
It is worth keeping CMT out there as a possibility for the people it fits. While it isn't a treatable diagnosis, and is one of the least positive ones it is better to have a hard diagnosis than to keep pursuing answers that aren't there or worse to think it is in your head when it is really in your genes.
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