CMT

RE: CMT

I have CMT Type 1.

The other name is Hereditary Motor and Sensory Neuropathy (HMSN).

It affects the peripheral nerves of the body, significantly the legs/feet/arms and hands.
Its a slow progressive disease.

If you log onto [link= http://www.cmt.org.uk ]www.cmt.org.uk[/link] its a support site for us cmt's and has info about it.

Dont know about cmt type 2 but the main thing about cmt 1 is fatigue and balance probs and falls.

RE: CMT

Hi Caringsoul-

Thanks for the info and for your PMs. There is a lot of information available-I've gone through all these sites over the past yearsand to be honest I'm looking for alternatives now. Not painkillers and mordern medicine dribble.
I was born with CMT and scoliosis (which they believe may be linked) and even though it was obvious from infancy, it wasn't until I arrived in Spain that doctors actually could explain the ins- and outs of CMT. (I'm originally from South Africa where I was put through countless testing 20 years ago,told I had HMSN, but that there was nothing they could do for me- just expect the worst and live with it) [:'(] I'm 35 years old and I'm not about to give up (even though it has become progressivly worse) My muscles have wasted away in my hands and feet, my feet drag when I walk, I have searing nerve pain... etc...

SO, now is the time to look at alternatives!!!!!
(((hugs)))
Leigh

RE: CMT

Sympathies there, I wear leg splints now when I need to walk a long wayor be on myfeet.
I have the added complication of displaced C7 in my neck, which is due to me having to look down all the time when I walk. I do find the splints a great help though ,especially when Im tired, it cuts back on fatigue so hence not so much falling.
I would recommend them.
My father must have had it as he had very bad cramps, bad circulation in feet/toes(which I have) and hand tremors (which I have).

I am on no medications and do not want to be on any. I dont get pains though but extremely bad chilblains in the winter, my toes go blue and legs blotchy when cold.

I do wonder if accupunture would help us with cmt, as its all to do with nerves?.

RE: CMT

Hi caringsoul-

Hmmm- I'm supposed to use a 'leg brace', but the darn thing is so uncomfortable, that I don't (and the ortho guy says there's not much more he can do to make it more comfortable.) My friends seem to think I should use a stick! The thought of using a walking stick at the age of 35 is horrendous! I know, I'm stubborn....

I definately think there might be something in meridian therapies!!!

L

RE: CMT

The splints I wear are comfortable and just plastic L shaped attached by velcro. very light. You being a bloke should be easier under trousers!.

Dont know much about meridian therapies. Start a thread on meridian therapies and see what comes up?.

RE: CMT

I'm a woman caringsoul.

RE: CMT

ORIGINAL: amorillum

I'm a woman caringsoul.

Oops!! sorry:).

I am seeing a chiroprator for an assessment for my displaced C7 next week as my neuro consultant tells me not to consider surgery because of the cmt, so I will ask her about any help with cmt at the same time.

RE: CMT

;)No problem- Leigh is a male/female name.
Good luck with your app this week. let me know how it goes.
L