Introduce myself

[Guest guest]

Hi, I want to introduce myself. I am the mother of two sons who were diagnosed

with CMT at the age of about 8 and 14 yrs. old. I also have two children who do

not have CMT.(a son and a daughter)

My sons with CMT are now 38yrs and 44yrs old.

My oldest son is having alot of weird symptoms, as of about 6 mo. ago. He began

to have severe swelling in his foot that is most affected by his CMT and severe

pain in the foot, especially at the times when the foot swells the most. A

doctor decided he had RSDS, a very painful nerve disease, in addition to the

CMT. They began giving him steroids and it hasn't helped . I am convinced that

it is just the CMT but I can't find anyone who is having similar symptoms.

If anyone has anything similar to share please contact me. I am getting

desperate. He hasn't walked on that foot since it started to swell, since it is

so painful to put any weight on it. HE is on crutches and it really limits his

mobility.

He has no access to a computer, he lives in the " boonies " in Oregon and has no

long distance phone service.

I am using his name as my user name. I have so enjoyed reading all of your

communication and have learned so much and been touched by your courage and

humor. Hoping to hear from anyone, sincerely, " Stevie "