Log in
Charcot-Marie-Tooth UK
1,312 members531 posts

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

2 Replies

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.


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!!

1 like

You may also like...