Charcot-Marie-Tooth UK
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first post ,,,,

first post ,,,,

hello first post!! i have not been diagnosed with CMT i went to the doctors because of pain in all of my joints that iv had for a long time and seem to be getting worst! im 56 female i have pain in feet too the doctor checked my feet and said did i know my feet were turning in and i have calluses and he said i have very high arches !!he said he thinks i have inflammatory arthritis and have ordered bloods !! i was reading what he said about my feet and CMT keeps coming up!! in the past i have seen neurologist because i have problems feeling things legs and arms!!! when i go swimming in the pool i cant feel the water temp properly its like its far away and i have trouble where my bowels dont work like the muscle has stopped working could all of this be connected !!! will anything show up in my bloods if it is CMT!!! thank yuu xxxxxx

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Hi. The only thing that confirms CMT is a genetic blood test. I'm surprised the neurologist has not ordered one already. Also - do you have reflexes? Ask your doctor to check yours - although this does not confirm CMT, it indicates it. Does anyone in your family have it? It is normally inherited. Lack of feeling hot and cold does suggest it, but there could be all sorts of reasons for poor circulation. Hope you find out one way or the other!

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I agree with the last comment but the other problem with your bowels is interesting as I suffer exactly the same with mine.

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All your symptoms except the bowel could be CMT, I wasn't diagnosed till I was 35 & no-one else has it in my family cos I was a new mutation, the genes just didn't form properly. I was diagnosed initially with a nerve conduction study, where a electrical stimulus is put at the top of a limb & receptors at the bottom to test what signal comes out cos then you know how well your nerves are conducting. That confirms CMT but the blood test tells exactly which chromosome is faulty & that is the exact type of CMT. It's quite time consuming for the scientists to look at all chromosomes, so they leave that test till last. I got to go, but best of luck!! The CMT Assn is also helpful.

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The disease can go back generations, and family can carry it and not show any signs. Now 150 years later you have it. Have your parents tested to check who is the actual carrier, so you will know which side was carrier.

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Your symptoms could be so many things. You'll need to work with your Dr. To get a proper diagnosis. I have most of the symptoms that you mention except for the bowel issue. However my biggest problem is muscles so weak that I can barely walk and its impossible to lift anything over a few pounds.

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thank you all or your replies another thing i forgot to say is i have inner ear problems and visit the ear nose and throat hospital ! i told the doctor that i have problems swallowing its like i cant feel the back of my throat and my tongue is constantly tingeing !! she put a camera down and said it looks ok but checked my gag reflex and said oh thats odd u dont have one!! she ordered a cat scan and that came back fine she left it at that ! i have seen a neurologist gastrologist ENT

but its only now my gp has said about my feet no one has put it all together ,

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I have problems swallowing also, had camera down my throat twice plus a bareum swallow test. It turns out that the muscle that aids swallowing is now weak and have to drink after every meal to make sure throat is clear.

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dawn there is no CMT in my family to my knowledge and the neurologist did check my reflexes they were weak but she said ok!! she said the test she did did show some loss of feelings in upper arm for some reason she didnt know why!! and my MRI showed two leasions she said they not in a place to indicate MS she thinks they could be to do with my high cholesterol !! she suggested i take anti epileptics for the tingeing feeling in my tongue and said everything looks ok that was two years ago ,,x

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Hi SJ, I was recently diagnosed with Sjogrens after complaining of never ending aches and pains - when I hadn't had any previously.

While a pain in various extremities I'd rather have it instead of CMT (and not as well as!)

Best wishes:-)

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Hi..in my opinion. .you should get another dr opinion. .I know what you'ressaying about water..I have CMT..I was fishing in a leaking boat last spring. .air temperature around 40' degrees. .water was over my ankles. .I never realized that until I looked down. .I feel pain..but the touch sensation is gone in extremeties....find the right doc ..best of luck to you ..you aren't alone

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They must do specific testing for CMT it takes quit a few vials of blood to perform the accurate testing for CMT due to the many variations of the disease. Will keep you in my prayers that it all comes out negative for you.📿

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