Re:Late onset CMT? and Joining group for others

[Guest guest]

Bruce,

My husband first noticed any symptoms at age 60 although he had the feet or a

long time. It was only discovered because he was sent to a neurosurgeon

following an auto accident. The doctor told him he didn't need surgery and

asked him if he could walk on his heels. Jim was amazed to find he couldn't.

I guess the doctor noticed the feet and made a guess. There was no family

history although his mother complained of tingling in her hands. His oldest

son, 51, has the feet and no symptoms. His youngest son, 25, doesn't have the

feet but has pectus excavatum and a little scoliosis.

Jim's gene tests were negative, but three neurologists from three different MDAs

all said he has CMT. His condition has deteriorated over the last 18 years but

not as fast as your parishioner. I guess he could have late onset CMT and a

stroke.

I have found this group very helpful and think Gretchen does a wonderful job.

Jim isn't as prolific a reader as I am, so I read and copy for him what I think

applies to him. I also have learned questions to ask his doctor. I am

especially interested as I am the mother of his youngest son whose wife is

pregnant with their first child. I also comment when I have something to say

even though I am only related to someone with CMT and don't have it myself.

Elinor