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Re: welcome Dennis

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Dennis: I too am in an electric wheel chair. I've had need since 1997 after

nearly 40 years of having outward signs of the disease, HNPP. It's great to

hear you're attitude is positive and you look forward and not live in the past.

Have you ever been tested for HNPP? It's the deletion form of CMT (or HMSN -

depending on what research article you read these days) at the PMP22 location.

It's known to be one of the most mis-diagnosed neuro diseases there is. I'm

living proof of that. LOL I was diagnosed finally and told by phone initially,

that I was positive for HNPP on Xmas Eve, 2003, and had a face to face with the

neuro doc on New Year's Eve. Wonderful holiday season it was. My first Xmas

present presented to me unwrapped. It actually was the best one as it finally

gave me an answer to years and years of frustration, depression, and anger.

Yes, what a wonderful Xmas!

Glad to hear you're " scoot'n " along with a great support group of family and

friends.

You're my senior by only about a year so what's it like to be 60? I'm betting

it's just like being 20. At least I'm counting on it. LOL

rQn I

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  • 1 year later...

Hi Dennis,

Nice to meet you. I don't know if this will help you or not but I

will tell you the story because it seemed to help my son. He was upset about

his CMT and said " THANKS for the CMT MOM! " So I said " WELL YOU DIDN " T HAVE TO

TAKE IT! " LOL

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