Re: MPZ gene

[Guest guest]

Hi,

I'm sorry I can not help you with a good Doctor in the Philadelphia

area,but I do understand how you feel about trying to help your son

with his feet problem.

Myself and my 23 year old son have CMT 1B which is a mutation

on the MPZ gene. My son walked on the outside of his foot and it

was very painful to him.He did not have Hammer toes.When he was

18 he went to a very good Orthopedic Doctor and he did an operation

to straighten his foot out.He has no trouble with his foot ever since.

I myself did have the Hammer toes and I had pins put in to straighten

then and that was when I was in my early 30's. I have not had any

problem with them since the operation. I have many other operation

on my feet ever since I was 12 years old.They have helped me greatly.

I wish you all the best in finding a good Orthopedic Doctor in your

area that does understand and now about CMT.Maybe Gretchen

know of a good Doctor in that area.

Take care

Sherry

[Guest guest]

Hi Sherry,

Thanks for the info. Glad to hear that surgery worked for you both. It makes

me feel more optimistic that there may be help for him. Do you know if we have

to wait until he stops growing before surgery can be done? We are hoping to

have the final results by the end of the year as to the type of CMT and would it

be alright afterwards if I asked some specific questions regarding the

surgeries?

Thanks again.

Carmella

[Guest guest]

Hi Carmella,

You are quite welcome.The Doctors that my son and I have had never said we had

to what until we stopped growing.The Doctor saw never once mentioned that

having the operation before he stopped growing would cause any kind of problem.I

would even see a Doctor now if it was possible to see what they could do for

your son's feet.I do not think the type of CMT is going to make a difference on

how they will fix the feet. Just make sure the Doctor knows a lot about CMT and

has done many of this type of operations..You ask all the questions

you need to know until you and him feel comfortable in every thing

the doctor is saying.

If you wish you can e-mail me directly at (sherryguitar@...) I

would be more then happy to talk to you at any time.

Take care,

Sherry