CMT

[niamhwet]

Hi, im new here! i was diagnosed with CMT 20 years ago. up until now i have coped fairly ok. however, i seem to have taken a turn for the worse and am constantly falling over and my archers have got worse. i have a new GP and instead of referrring me back to the neorologist he sent me for X-rays on my feet/ankles! Do x-rays show if my CMT has got worse?

[Morllyn]

niamhwet X-rays can show how bad your arches have gotten. You may need surgery to take some of the arch out of your feet. My husband's had gotten so bad that he was walking on the sides of his feet, so they did surgery to somewhat flatten the arches out. He also wears braces to keep from falling due to drop foot.

[niamhwet in reply to Morllyn]

Thankyou I guess that makes sense now. x Im starting to get pain when i walk now is that common also/ x

[Morllyn in reply to niamhwet]

It can be but, you need to see a doctor so they can look and see why you are having the pain and what can be done about it. It may be as simple as a medicine or a splint or as complicated as surgery. You shouldn't guess at this. That is what the doctors are for.

[CMTUnitedKindom Partner]

You probably also need to see the neurologist too. And maybe an orthotist? Splints can help delay the need for surgery

[niamhwet in reply to CMTUnitedKindom]

Are we allowed to exchange contacts details on here? i would really appreciate a chat to someone that knows what they are talking about. in person I mean x

[CMTUnitedKindom Partner in reply to niamhwet]

I think it's probably not a good idea! But if you want to ring me in the CMT office, you're more than welcome. The number is 01202 474203.

[Space_Monkey]

Hi,

KarenCMT runs a support group that might interest you. They are based in Christchurch (Rather strangely just down the road from me) you can start by looking at their website cmt.org.uk. I don't know where you are based but when I was first diagnosed I found them a great source of local support and of course lots of people with varying levels of expertise and experience.

Regards

[CMTUnitedKindom Partner in reply to Space_Monkey]

Wish we had real names here, not usernames? Do I know you, Space Monkey?

[Space_Monkey in reply to CMTUnitedKindom]

No I don't know you personally, but I have come into contact with you and cmt organisation in the past.

I also have the cmt book which you provided and popped into your Broadway office a number of years ago.

[niamhwet]

i live in Bexhill karen which is a shame but ty anyway x

[CMTUnitedKindom Partner in reply to niamhwet]

We are a national support group, so you don't have to be local to me to get support! Give me a ring!

[niamhwet in reply to CMTUnitedKindom]

Need a number to call.

[CMTUnitedKindom Partner in reply to niamhwet]

01202 474203.