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Old 08-15-2015, 08:31 PM #11
Susanne C. Susanne C. is offline
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Susanne C. Susanne C. is offline
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I would make sure that they know about the drugs contraindicated for cmt, a number of cancer drugs are in the list. Cancer treatment often causes PN, so could certainly ramp it up in people with it.
My CMT was early onset, I was affected in childhood, clumsy, unable to run or play games, odd gait. My feet started going numb in my early 30's. I have had pain in my legs and restless legs as long as I can remember. The pain is very severe now.
I was diagnosed by a neurologist in my mid 40's, she sent me to Johns Hopkins to see if anything could be done as it was rapidly progressing, but no. I have two sons with symptoms, 28 and 30 years old. Numb feet, weak ankles, tingling hands. One had the slapping gait from early childhood and has repeatedly suffered ankle sprains and falls. My damage was primarily axonal so presumed to be type 2, I refused further testing as no real point in it.
I am sorry that your daughter is going through this. I think CMT can really exacerbate other conditions as neurological problems are very far reaching.
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Old 08-15-2015, 08:53 PM #12
paty91356 paty91356 is offline
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Susanne C. Thank you so much for the reply and advice....I really appreciate everyone's input...
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Old 08-15-2015, 09:30 PM #13
Kitt Kitt is offline
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Vincristine is one drug that is absolutely off limits for people who have CMT. It can do a number on other people as well. I know of one person like that.

Another definite high risk drug is Taxols.

Last edited by Kitt; 08-16-2015 at 11:09 AM.
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