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14 with CMT

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Faye,

All I can offer is my own experience when I was 14. Diagnosed 4 years

earlier, I had a muscle/nerve biopsy that summer that showed nothing

out of the ordinary. Life in general was fairly smooth, by that time

I was on established doses of Potassium for muscles and Ritalin for

fatigue. My feet hurt after walking around school all day, sometimes

my muscles got spastic and cramped. The best solution for this was

sleep. I was doing alot of horsebackriding at 14 too.

I've never been " tested " (DNA) for CMT. Am the last one alive in my

biological family, so it is pointless for me. No one in the family

has anything even close to resembling CMT.

I have never had problems with red hands, or anything with hands,

except when exceptionally tired, may drop something. Any pain I have

encountered then and since is foot related, not in my entire body. CMT has

progressed so slowly I haven't noticed much since - but I sure was

worried about " progression " at 14 and what 'would' happen.

We are all different. I wish I could be of more help. Has your

daughter been tested for CIDP or other immune related disorders or

neuropathies?

Gretchen

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