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Charcot-Marie-Tooth UK
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i have just recently been diagnosed

it all started when i was in year 8 where i had pains but not so bad it was bearable and then gradually it got worse in year 9 going to year 10 and i started walking very slow i would do exercise and it would make me feel more weaker and unstabalised. i then stopped running because my legs felt really heavy and then i thought it was enough and i made an appoipment took some blood test and it came as vitamin d deffiency but then my mum started saying there was summat wrong wiv me and i went for another blood test and it came as ck (creatnine kesis) but then i went to a genetic testing and they believe i have inherited cmt as my sister has the same condition.

i have cold feet and winged scapula can someone give me advice to keep me mobile and strong on my feet and increase my speed in walking

6 Replies

Hello to Diagnosedcmt ...... In he UK the only doctor who can give you the correct diagnosis of Charcot-Marie-Tooth (Cmt), Neurological Disease is a N.H.S Clinical Consultant Neurologist:

He/She will do a full physical examination to see if you are displaying the normal symptoms ? > High Arches / Drop-Foot / Muscle Wasting / Muscle fatigue etc: a) Full family history is taken: b) Full blood samples are taken: (Depends on N.H.S budget available): c) Nerve Velocity (speed) test to measure your nerve's speed i.e, brain to toes etc: d) Sent to specialist laboratory: Very expensive for N.H.S cost(s) £10,000 (circa): e) Results expected in 6/8 weeks:

Request your own GP to refer you to a local N.H.S Trust Neurologist:

Best of health...... John (Glasgow)

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thank you so mutch for your support


Poor you! That is more or less how I was as a child too, but you probably know something about CMT since it's in your family. John below is right though, you need to be assessed by a proper neurologist. Ask your GP to refer you. Hope it goes well.

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thanks so much for your support


Hi, DiagnosedCMT,

I'm sorry you are having such a hard time with CMT while you are still at school.

There are a number of different types of CMT depending on which gene is faulty We are all different, and even people in the same family with the same type of CMT, will experience it differently.

I was worse than rubbish at sport and gym at school and really dreaded PE lessons; it seemed so strange and unfair as there was "nothing wrong with me" - in those days very little was known about CMT and nobody had heard of it anyway. So I grew up detesting even the word "sport" and certainly never got the hang of dancing. However I didn't really have too much trouble with walking apart from getting tired, and tripping rather a lot. I even learnt to ride a bicycle for shortish distances . I am fortunate in not having pain associated with my CMT, apart from getting cramp sometimes.

The problem with CMT is that it will probably get worse over your lifetime, though usually this happens very s.l.o.w.l.y indeed. The thing is to try to make it even slower.

The best thing is to keep moving. Walking is good for you, so is swimming. Running is also OK - if you can do it. But do exercise in moderation. A little and often is much better than exerting yourself until you are exhausted..

There are also specific exercises for stretching muscles, and for balance for people with CMT.

If you see a neurologist he/she should refer you to someone who can show you how to exercise.

Meanwhile they are working on all sorts of ideas (some of which involve stem cells) to improve things for us , even if they can't cure us - but they are not there yet !

Good luck !

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thank you so mutch for all of your support


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