Re: need Dr. in Hershey

[Guest guest]

Hi ,

I read your post to and you mentioned seeing a Dr. in Hershey. Can I

ask you for the name of the neurologist and

orthopedic you are going to? Our current neurologist wants us to see a

neurologist who specializes in neuromuscular diseases. I called this morning to

make an appointment for my son and his first available is May 4th! I had to

have our current neurologist fax over all his info and then the Dr. will decide

if he will see my son or not and if he decides to he may bump his appointment

up. Then we hope to move on to an orthopedic surgeon.

My son is 17 and has a mutation on his MPZ gene and Athena has not seen a

mutation like this and are not able to tell us which type of CMT it is. It's

interesting that your Dr. was able to give you a type with the nerve studies,

was it the that test where they shock the muscles (EMG?) and the one one with

the needles? My son had both done.

My son also was a tip toe walker, tripped a lot, numerous sprained ankles,

issues running, etc. We just assumed he was growing into his feet - he is

pretty tall and has always had decent growth spurts. We just feel so awful now.

We had never heard of CMT until all this. He has used two different types of

orthotics from two different Drs. and he had much more trouble with them then

without. I'm glad to hear that they are helping your son.

Carmella