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Hi Group: I am so new to this. You all seem to know so much about your

condition. In 1984, due to inability to find a job in my field, I took

a temporary job as a drug clerk at Eckerds. I had never been able to be

on my feet because of the pain, but I

thought I could do it for a short time. I was on my feet eight hours a

day and would go home on lay on couch with my feet on a pillow because

they hurt so. After 2 months I got a job in my field and one where I sat

and worked on the computer, etc. most of the day.

I thought after awhile the pain would go away. After a couple months I

realized it wasn't getting any better. Then began my journey through a

medical jungle that didn't have the slightest idea what was wrong.

After seeing 8 different doctors I finally got a diagnosis of PN. To

verify it I spent 8 days in the hospital having all sorts of tests and

at the end the " expert " Dr. Harati, announced I had PN. Offered

me this wonderful help -- take mega doses of B Complex, wear soft shoes,

and stay off your feet. So that is what I did for 17 years! No one,

not one of the eight doctors suggested I return, or that they follow my

condition. Jerks!!

A social worker friend of my said that she heard of patients with PN

being treated with Neurontin. About a year later I decided it was time

to try a Neurologist again. I am being treated with Neurontin and

Carbatrol. I also saw a rehab doctor, Maranella Monk, she is a

neurologist and orthopedic doctor. It was she who finally diagnosed

me as have CMT. I have severe arthritis in my knees and she has me do

aquatic therapy three times a week to strengthen my legs. I believe

this has helped me along with the Neurontin/Carbatrol. I think I was

really going down hill fast when I saw these ladies and I think they

helped to stop it. Pain is much less and I am steady on my feet some

days. Other days can be bad. I hope to learn about my condition from

the

group so I will know if I should warn my nieces and nephews. I do not

have children of my own. End of long story. Thanks for listening.

Doris

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