Do most of you have the inverted champagne bottle legs that rhuemy says is classic?

[rowantree]

Rhuemy won't entertain the idea that I might have cmt because I don't have the classic looking legs, and my main symptom is pain first and weakness second.

[CMTUnitedKindom Partner]

I don't have champagne bottle legs either - due to too much general blubber, I'm afraid to say! It doesn't have to be that way to definitely be CMT.

However.... The pain first, weakness second is quite unusual, I do have to say. What leads you to suspect that it could be CMT? By "rheumy" I presume you mean rheumatologist? If you are really convinced (family history maybe?) - ask your GP to refer you to a neurologist - they're the best people to diagnose CMT definitively!

Karen

[Patricia-Anne]

So far I have suffered with mainly pain, some numbness and tingling. I have a P0 mutation (CMT1B) which I understand from the neurologist is associated with more pain. My symptoms were not classical but I now have a confirmed genetic diagnosis.

I hope you get an answer - it took over 2 years for me to get this diagnosis.

[UTTERJOY4]

Hi,

I don't have the champagne bottle shaped legs either. The neurologist would be better equipped to know if it was possibly CMT, in my opinion too. It took me until I was 38 to get diagnosed and if it wasn't for moving from London to Lincolnshire and finding a wonderful doctor I'd still be feeling like a hypochodriac as in London I kept being sent away from my doctors being made to feel like the pain and other syptoms were all just in my head.

I'm now in the process of waiting for an appointment for my daughter who is nearly 18 to get tested as she is showing similar signs that I have in the past and Id rather she knew now than in years to come.

Maybe you should consider speaking to your doctor again if you have reasons to believe you may have CMT.

Good Luck

[John1945]

Hello to Brownlee ....

C.M.T. is the most "frustrating of NEUROLOGICAL diseases !

1) It is a NEUROLOGICAL inherited disease : i.e (passed from a parent to their offspring) :

2) You cannot "catch" C.M.T. ! If you have it, it is in your genes, and there is no cure for it :

3) Many Doctors, and Health Professionals, may never see a single case in their career :

4) You require to consult a NEUROLOGIST to confirm your diagnosis :

5) "Champagne" bottle legs, or "Stork" legs are a classic symptom of this disease :

6) Diagnosis is by BLOOD TESTS being sent to a specialist university laboratory :

7) Also NERVE CONDUCTION TESTS, (speed/velocity) of "brain to muscles" signals strength :

8) C.M.T. itself is not painful, however muscle weakness's, and bone deformities cause pain :

Please keep on persevering until you get the correct diagnosis !

Best of luck ....

John .... (Glasgow)

[rowantree]

Thank you. Rheumatologist is pretty sure it's early onset osteoarthritis, and I'm just unlucky that its come out in both hands, feet and knees at the same time, and I have cavus feet!

[Amanita]

Hullo Rowantree -

Good luck with getting yourself referred to a neurologist. Having a parent with CMT is generally a strong bit of evidence that that is what you may have yourself (it is usually inherited).

If after a pretty thorough examination the neurologist does suspect CMT, he will probably send you for nerve conduction tests (which would determine broadly whether it is the "electric wires" or their "insulation" which is responsible for your problems). This would probably be followed by a genetic test (done from a blood sample,with results taking some months to arrive), which may be able to determine what subtype of CMT it is.

Good luck with finding those sandals. Personally I find shoe-hunting a complete nightmare, and only have one pair (extra-wide and dreadfully sensible lace-ups) which remotely fit.

I don't have classic "champagne-bottle / stork legs" either. Narrowish ankles,certainly, - but calves thicken a third of the way up, and above: CMT is a beast, but a wonderfully varied one.

[Amanita]

Rowantree- you submitted your "verdict" while I was typing my answer (I am about the slowest person I know on a keyboard). Osteoarthritis will be quite enough for you to deal with, so let's hope you haven't got to put up with CMT as well. My aunt had both, and had a pretty rough time.

[rowantree]

Thank you armanita . I don't think I have both. I think it's one or the other. Although it could be oa and fibro. It's not in my family as far as I know, but my son has the weakness symptoms, but not the pain, thank goodness,!

[Jud61]

Many things change the shape we are over the years. I remember being so ashamed of my thin 'funny' shaped legs at school that I would stuff paper down my socks to fill them out a bit. I couldn't understand why my mum's legs weren't the same shape as mine having the same disease but now I have become the same age as she was back then I find my legs too are filled with water and are swollen from all the inflammation and damage done by the many flls over the years.

[Jud61]

falls that should say .

[williamalfred]

i have the champagne bottle legs, my calves and ankles are getting thinner look more like chicken legs. iv` now found out i have osteopenia and osteo-arthritis in my neck and shoulder maybe due to all the strain of coping with things due to cmt tryin g to pick things up and daill tasks

[cromar]

did someone cured this condition