Sue/Diagnosis

October 20, 2001

Hello Sue,

OH my goodness! I know what great hopes you had in this appointment with

Dr. and I am so sorry your expectations were crushed. If it is any

consolation, my EMG and NCV have been 'read' as not completely

conclusive of CMT and my toe walking throws docs and PTs off too.

I wonder what Doc expects your MDA is going to do? IS re-retesting

and re-testing so necessary? As for repeeating the EMG/NCV's, no way,

of course, this is just me yapping, but I just got to the point of

enough was enough. I do understand though how you want a diagnosis for

your sons as well and in the UK is the DNA test done?

Hope you get a good night's rest - you know you have lots of CMT pals in

the States who HAVE been diagnosed 'properly', and without lawsuit (lol)

so keep that option open. It strikes me as so strange you are unable to

get a bonafide CMT Diagnosis. I have often said the first diagnosis I

had at age 10 by simply watching me walk was IT for me....and still over

the years, as you know, I was re-diagnosed with other " progressive

neuromuscular conditions " ! lol, most defintely ones I do not have

either!

~ Gretchen

Sue Horder-Mason wrote:

> he did admit was a progressive

> neuro-muscular condition. SUE, this makes me laugh, but DUH, don't we ALL

KNOW WE HAVE THIS????

October 21, 2001

Gretchen

Thanks so much for your email. I've just completed a fifteen hour working day

after 4 hours sleep last night and I'm totally exhausted.

It was a crushing blow yesterday in many ways yesterday but I'm going to contact

the MDA and see how they can help me on a practical/coping level with my

condition.

But now I know how much the 'quacks' in the UK will go to cover up their

colleagues mistakes. I will undergo more NCV/EMG's and give this guy one more

chance and see if after the tests he has the balls to admit I have CMT. It's

only a few more months and after nearly 41 years it's nothing.

If after this (and Dave and I have discussed it) we have two choices.

1) is to get all my records including the recent test results and go privately

to see to neurologist who is not connected to the health service and see what he

has to say.

2) is to go abroad and get a diagnosis.

But it really is frightening the way these guys play about with peoples lives

and I'm not only talking about mine (Hilton- did say there was no treatment

or cure for my condition) but with my sons and my grandchildren. It only makes

me more determined to make everyone more aware of CMT.

If these doctors only had to put up with a fraction of the pain and disabilities

that we have to live with on a daily basis they would soon get their act

together but unfortunately it is a case of it doesn't happen in our backyards.

I do feel very angry and bitter not to mention so tired but I just had to reply

to your email. Thanks so much for your love and support not only with my hopeful

diagnosis but also with Dominik.

We do have a battle on our hands and I can't understand why because our disease

is so common and maybe selfishly but in my case it is staring them in the face.

I could scream maybe that's what I should do - LOL

Bless you Gretchen and thanks again.

Love and hugs

Sue X

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

----- Original Message -----

From: Gretchen Glick

Sent: Saturday, October 20, 2001 12:58 AM

Subject: [] Sue/Diagnosis