Charcot Marie Tooth Disease

[finngirl]

Hi, If anyone has questions,feel free to ask me. My email is [moderator note: e-mail address has been removed]. I am 43 and was diagnosed with cmt when I was 3. My brother also has cmt I presently don't walk but use a cart/scooter to get around. I probably started having problems falling and atrophy in middle school and throughout the years. My Mom is a Nurse and she has helped me alot;dealing with pain and incompetant doctors. I wanted to say,if someone doesn't know;that CMT affects all of the muscles,not just the muscles in one's feet or hands. I have had pneumonia many ear infections,and also no surgeries on my feet or legs.
I have been through alot so if anyone has any questions,please email me. I know it is difficult when one just finds out they have cmt!
j

[eban]

I have been diagnosed since December 2007, but I have known I've had it since 2005 foumd artible in local paper concerning a male my age who had it the had a hotline for the CMT association and I talked with someone there and they said I had all the symptoms next thing was to get ahold of incompetant Dr. to refer me to a neurologist and when that happened Neurologiet tolg me he could tell me in 15 minute after electric impulse test he would know if I has it and I did. I did not know ear infection a symptom I get them on a regular basis. e-mail me at [moderator note: e-mail address has been removed] Thank u

[TarrynBe]

Hi Finngirl,

a good friend of mine also suffers cMT. Like you he was diagnosed at a very young age.
I wonder if u would be interested in chatting with him. He lives in chicago and is 25.
He has quite a lot of discomfort and pain. He feels very isolated due to his illness.

Just let me know :)

Thx
Tarryn xxx

[finngirl]

Hi Taryn,
I would be happy to talk to your friend who has cmt. My email is [moderator note: e-mail address has been removed] and if my email address is removed I would be happy to talk to him here on this forum.
Have a good day!
Jude

[lvreddi]

Hello all~~I just found this online, and have some questions. I have just been diagnosed as having Charcot. That's the only name it was given. Please, can you tell me the difference between Charcot and as you call it, CMT? I had symptoms for 6 months before going to the doctor. I have Peripheral Neuropathy, diagnosed in '89. I was given antibiotics for 7 weeks at home IV care, and 2 months of oral antibiotics. I'd had ex-rays, MRI, bone density scan, before having the antibiotics. I went then to a orthopedic surgeon, who diagnosed the Charcot. I am very frustrated, and I'm having difficulties with my insurance with some things because I do not have diabetis. I am having some shoes made and the ins. won't cover the shoes because of the diabetis. I feel as I sort of have it-don't have it. Any help you can give me is so much appreciated. Thanks

[finngirl]

What did they diagnose you with? Being Diabetic has nothing to do with CMT(Charcot Marie Tooth). I would ask your doctor for a formal diagnosis and go from there.

[lvreddi]

Hi~~ The orthopedic surgeon that I saw just said that it was Charcot. He'd taken an x-ray and made an on-the-spot diagnosis. I'm having shoes made, and they should be ready any time now.I don't have diabetis, so the ins. won't cover it. I see the words "cmt" and was just wondering if cmt had anything to do with Neuropathy. I just feel that I don't fit in anywhere. Thanks

[elenap]

Hello! I was diagnosed with CMT when I was about 3-4 years old and I am now 25. I have not been to a doctor for a check up on my feet since I was 14. Im not sure what kind of doctor to visit. Should I go to a podiatrist or a orthopedic? please let me know soon because I have an increase of pain in my right foot and I have put this off for a while and I am finally ready to go get a check up on this.

Thanks in advance!!!!

Elena

[Kimmergrand]

Yes CMT has to do with Neuropathy!!! I live in Canada and was diagnosed at the age of three. Many people with CMT develope Type 2 diabetes and there is extensive research being done on this. Check it out Google Dr. Vera Bril. Toronto General Hospital.