Patient Comments: Charcot-Marie-Tooth Disease - Symptoms and Signs

What symptoms and signs did you experience with Charcot-Marie-Tooth disease?

Comment from: Damueyell, 35-44 Female (Patient) Published: April 24

I started dislocating my right knee as a child. When I was 14 I went to see an orthopedic surgeon and when he saw my feet and ankles he asked if I had Charcot-Marie-Tooth disease (CMT). That was the first time I had heard about it. I was diagnosed via nerve biopsy, and then again when I was 33 via blood test to determine the type. My mother, my son and I, all have type 1A.

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Comment from: Katrina, 45-54 Female (Patient) Published: July 08

Wonder if stress aggravates Charcot-Marie-Tooth disease 1, I find I slur my words and often bite my tongue. I also trip, stumble, etc., a lot.

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Comment from: MichaelM, 55-64 Male (Patient) Published: May 02

I just turned 60. Recently I've been having trouble with muscle cramps and spasms in the back of my right upper leg. I am also using ankle braces now. I don't know if this is another symptom of Charcot-Marie-Tooth disease to deal with or just a fluke. After so many, what's one more, I suppose. I have stayed as active as possible over the years. I have not been able to hold a job since early 50s. And yes, I do feel like one of the lucky ones!

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Comment from: Prdmomof3, 45-54 Female (Patient) Published: April 11

I have had signs and symptoms of Charcot-Marie-Tooth (CMT) disease since I was about 6 years old (I am now 47), but was not officially diagnosed until I was 36. It was when I had been involved in an auto accident and was literally being wheeled into surgery that my orthopedic surgeon knew what I had. While I have seen many doctors I have found my limitations through the years (for the most part); and while my balance is off, I can"t use my hands like most and fall occasionally. Until this past year it"s just always been something that was aggravating but tolerable. I have noticed things are getting worse, but I"m fighting it every day.

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Comment from: bobbyD, 75 or over Female (Patient) Published: August 08

I haven't been give the name of my disease but am seeing a specialist. He hasn't told me that it is Charcot-Marie-Tooth disease (CMT) but I have had these symptoms for over 15 years and my daughter has the same feelings, or lack of them, in feet. I will ask my doctor if this possibly is what I have so as to inform my children and family.

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Comment from: Mike, 55-64 Male (Patient) Published: June 25

My toes look deformed. I have gait problems. I trip. I have balance issues. I have stabbing pain in my feet. I have no reflex activity below the knees so when I get pain from a stubbed toe or something similar, it is very delayed.

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Charcot-Marie-Tooth Disease - Type Question: What type of Charcot-Marie-Tooth disease do you have, and how has it affected you?
Charcot-Marie-Tooth Disease - Treatment Question: What types of treatment have you received for Charcot-Marie-Tooth disease?
Charcot-Marie-Tooth Disease - Experience Question: Please share your experience with Charcot-Marie-Tooth disease.

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