vitamin c /other questions

[Guest guest]

-Hi and everyone.

I live in Florida now but I'm from South Jersey> I was

also diagnosed at Penn, by Mark Brown. He was a good

diagnostician but zero help after that. I'm wondering

what neurologist you're describing as awesome! I went

to a CMT conference at Penn in about 95 or 96. It was

pretty well attended so I should think there'd be a

good number of people for your support group. My

biggest problem is pain also. In fact at that

conference everyone else complained about how tough it

is to have a disability that is so obvious and I felt

like I didn't belong in that group at all because my

disability doesn't show at all and my big problem is

severe electrical pain and I'm always expected to do

things I can't do. I definitely have the overwork

weakness but with only " mild fixed deficits " which

makes it difficult to get even the help I need from

Voc Rehab because they read that as it's not very bad.

I have a swim school and aquatic therapy practice in

my back yard but some of my clients are very hard on

me physically. I neeed help from Voc Rehab to get

speech tp text technology for my computr and I need

someone to help with the paperwork which is extremely

hard for me to handle because my arms are in so much

pain. I will say that neurontin helps me immensely. I

really couldn't have gone on without it. I was put on

it in 96 or 97...right when it came out. My doctor was

, the head of physiatry at the U of P.

He was great to me but he left Penn.

, how long have you been going to the U of P? Do

you know Lou Gallintino, a PPT who worked there?

She was really wonderful for me, totaly different than

all the others I've known and I've known dozens

because I'm an occupational theeapist myself and I've

had a lot of physical therapy that was ok but nopthing

special. That's why I'm telling you about Lou on

case you can go to her. I see that you just lost your

mother. I'm sorry to hear that but she was extremely

helpful; to me about the emotional difficulties that

arise with a chronic, progressive disorder like CMT.

Everyone--I just now got a computer working again! Now

I just have to be careful not to overdo the typing.

It's great to be back, though.

I've read some about overwork weakness and want to

read more about that. I have CMT Type 2. Does someone

know how you know if it's 2A or not. I recently saw

Dr.Walter Bradly at the U of Miami and he just saud I

had type 2. I saw the recent postings on research

about finding that 2A is a result of a problem in the

mitochondria.

Also, I know that type 2 is primarily axonal loss with

a lesser degree of loss of mylin. You folks who know

about the study of vitamin C for CMT, what do you

think about it's use for type 2? I realize it couldn't

hurt but I con't have a lot of extra money to try

every possible treatment.

Bye for now.

Deni