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


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

Comment from: Nana, 13-18 Male (Caregiver) Published: February 09

My grandson was diagnosed with Charcot-Marie-Tooth disease when he was very young and started having surgeries on his feet right away. That child can hardly walk without shoes because of the terrible pain he has experienced all his life. He has had four surgeries on his feet so far. We have moved to West Texas and would really like to find a support group for all of us and we still do not have a good neurologist. The prior ones he has had said that his syndrome is progressing at a high rate every year. We have been there for him, but having some outside support would be such a good thing.

Comment from: Lorimeyerbutler, 45-54 Female (Patient) Published: September 07

I have been diagnosed with Charcot-Marie-Tooth disease. I wonder if it could be the culprit for an unexplained 240 pound weight loss.

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.

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.

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!

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.

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.

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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