Charcot-Marie-Tooth UK
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Treatments, therapies..online references?

hi all, i have just joined the site...my mum was diagnosed with CMT 30Plus years ago, and i would say i had a good idea i had it from age 20 onwards...i am now 40 and was formerly diagnosed 2 years ago.

i wondered if any of you had a good online references, somewhere where you gain all your knowledge for possible treatments ? or therapys etc...my sister seems to get alot of various treaments for free on nhs that she learns about from her doctor...but i do not get to hear of the various things i can do through mine...mainly as very few of the doctors at my health centre seem to of heard of CMT

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Hi, Minkimoo,

There is certainly more info about CMT available online now than a few years ago.

But the only way I know to access treatment (i.e. help in managing your CMT symptoms) on the NHS is via a consultant neurologist. GPs in general have never heard of CMT, or know very little about it.

Were you diagnosed by a neurologist? Can you go back to him/her and ask about access to a physiotherapist who can give you appropriate exercises, an occupational therapist if you are having problems with your hands - or an orthotist if you are constantly twisting your ankles or tripping over your toes and falling... ?

You will not be able to prevent the progression of CMT but keeping active and doing the right exercises will help to slow it down.

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I'd like to know that too. I get podiatry, orthotics, physiotherapy but its no good asking a GP, they just don't know. One even looked it up on the internet in front of me!!

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