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Originally Posted by shikantaza
Hi Lorraine,
I am so sorry to hear that. I don't have Charcot's (I do have a whole lot of other stuff) but I thought I should let you know that I am a carrier. A few years a neurologist named Mark B. Bromberg, at the University of Utah asked my family to participate in a study - because, unfortunately, my family lineage has a astonishingly high rate of Charcots (four cousins and an uncle), but all in the boys. I know I am a carrier because I have the freaky feet (God now I think about it, that is one of the only things I haven't been checked out for yet with my own deal, LOL).
Anyway, this Bromberg guy is one of the top neuro's and researchers in the field specializing in Charcot Marie Tooth Syndrome, perhaps it might be a good idea to track him down and see what insight you might be able to glean from him. He seems like a pretty likable guy which is most unusual for a Neurologist. ; )
Best of luck. (Maybe were related)
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Do you have any relatives in the S. Central KY area? I chatted on a board a few days ago with a gal who has Charcots. It runs down BOTH sides of the family and her three (I believe) sibs all have it. It was just dx'd in this generation as all other cases have been mild. Evidently it goes back several generations. The family is being studied at Vanderbilt U. in Nashville.