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Re: understanding CMT

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Hi Carmella

I hope you get some more answers when you go to the neurologist.Please let us

know how things turn out.

Gretchen has helped me so much to understand my CMT 1B. I was at one

time just as confused as you feel you are right know. Just hang in there it will

be ok. How is your son handling everything at this time?

Take care

Sherry

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  • 10 months later...

, I agree. I think it would be a tremendous help if more people understood

CMT & the foot drop & that a person with the physical ailment can be very

competent in every other way. Well, thanks for your input.

Take care,

Dawn

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I forgot to mention...I don't have classic foot drop, which is likely another

reason why the diagnosis was missed for so long.

I actually have one nearly normal foot with mild toe issues and one severe foot

with high arch/hammer toes and curved ankle. My father & uncle have two severe

feet. We always thought it was just a foot deformity that was working it's way

out of the family, since I got just one bad foot and my father had two.

Ironically, my father & uncle are actually doing quite well, while I'm the one

with the disabling physical challenges.

My non-medical opinion is that the foot deformity is so severe and was fully

developed prior to adolescence that the bones simply 'hardened' in place. There

is very little flexibility in my foot and ankle, therefore, it pretty much stays

up when I walk.

I'd love to spread the word that CMT can exist in an advanced form without foot

drop and with normal looking calves.

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