Doctors and CMT.

[Guest guest]

A great big hug and hello to all newcomers to this group. I'm Sue, aged 40 plus

13 months, a mother of 3 and in a wheelchair thanks in part to my CMT but also

thanks to doctors who for over the past 40 years have failed to diagnose me

despite showing all the signs since birth of CMT and developing some new ones

along the way.

Many if not most of the doctors you see are prepared to give you a false

diagnosis or completely the wrong advice rather than admit they don't know a

damn thing about CMT or your condition.

My experience has been to learn as much as you can about CMT as you possibly

can, study it as if your doing a doctorate in it (you are) and then go and find

someone who understands.

Gathering this info is easy.

Here are some useful starting places

www..org

www.cmtint.org

www.mdausa.org/diseases

I also use search engines I find www.google.com is very good and key in

Charcot-Marie-Tooth Disease. You will find good info and you'll find garbage but

we're here to help you.

There is also an excellent book that everyone of us should have beside our bed

and that is REHABILITATION MANAGEMENT OF CHARCOT-MARIE-TOOTH DISEASE by PAOLO

VINCI.

This book can be bought on line at www.stradeservizi.it/cmt.htm I've read it

believe me you need it because without it more of us will end up in wheelchairs.

Your doctors need it and they need to read, understand and use it because if

they don't - they're hindering you and hurting you and you don't need that.

Use the internet, read up all you can and then start asking questions and use

your gained knowledge to question again. If you don't CMT will remain in the

middle ages and people, me, you, our kids will suffer needlessly.

I'm off my soapbox now but believe me this email is written with love by someone

who has been neglected and abused by doctors for years but most importantly by

some one who lives in hope for a better future for us all.

Love and hugs

Sue X

If you want to read my story it's on my website listed below. I'm a writer who

lives by the adage Publish and be damned. (perhaps thats it - LOL)

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller