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.

[TaLLan]

Okie dokie this is what the doctor is telling you, he is saying you have Charcot foot which is supposed to be caused from diabetes as opposed to Charcot Marie Tooth syndrome which is genetic. My belief is that Charcot foot is Hogwash and just a way for ins companies not to pay for CMT. The only way you can truely be diagnosed with CMT is by a Genetic blood test. Neurologist can do test all they want and 52% of the time those test show no CMT when in fact the person has it. So insist that they give you a genetic blood test for CMT. Good Luck