Explanation

[Guest guest]

I think I'd better offer an explanation to my outburst. I saw one of the top CMT

consultants in the UK back in October. He had all my records including those

from other doctors who claimed I know a lot about CMT and therefore could be

'putting it on.'

I haven't got a copy of what he wrote but when I do I shall post it but I've

read it.

Basically he said I have a lot of misguided conceptions about CMT (so we've all

got it wrong) also he claimed that I gave up trying in some of his tests. These

included lying on my back and lifting my legs up off the bed. I haven't been

able to do this for ages (you ask my husband - sorry) and when I did this I

really tried but they only moved about six inches and he claimed I was giving

up.

He said he could find no evidence of muscle weakness or wastage in my upper body

(he wasn't there when I tried to fold a sheet last week and failed because of

the pain and inability to lift my arms) and then he admitted that yes I showed

severe muscle wastage in my lower legs but (my interpretation) he couldn't

really explain why I couldn't walk.

He also added that he had put me in touch with the MDA and had authorised more

NCV/EMG's and would write to my GP with his findings.

Translated this means he won't see me again but will hand me over to the MDA. I

spoke to the MDA on the 21 October and explained why I was ringing to which the

guy said he didn't think there was any way he could help me but would wait for

the letter from the doctor.

Five weeks ago I left a message on their answerphone.

Four weeks and four days ago I left another message

Four weeks ago I left another message

Three weeks ago I left yet another message

Two weeks and two days ago I spoke to someone who said they'd got my messages

and the letter from the doctor and it would be a few days until they get in

touch with me.

Today (Wednesday evening 16 days later I've heard nothing - but are you

surprised - because the doctor has written and said I'm a fraud.

This guy is happy to write me off as someone who has a progressive neurological

problem without a name and yet I show most of the signs of having a common neuro

disease so does my father, my sister and my two eldest sons.

Sorry for this but I really am angry not only for me but for all of us who have

had so much crap thrown at us by so called 'gods in white coats.'

Love

Sue

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