Patient Comments: Charcot-Marie-Tooth Disease - Type

Question:

What type of Charcot-Marie-Tooth disease do you have, and how has it affected you? Submit Your Comment

Comment from: Diana, 55-64 Female (Caregiver) Published: March 19

I was diagnosed with Charcot-Marie-Tooth (CMT) disease in 2016. I have the rash on my legs too, and the chief neuromuscular specialist told me it has nothing to do with CMT. I have all the other disabilities you have listed. The worst thing for me is no one I know ever heard of it, so they don't recognize it. It makes me feel so isolated. I have terrible balance, dizziness, deformity, curled fingers and toes, and shooting nerve pain. I have had 7 fracture and boots in 3 years. Neuropathy is so bad. CMT took my passions away in life.

Comment from: zinna, 75 or over Female (Patient) Published: March 05

I have Charcot-Marie-Tooth disease. I wasn’t having problems until I fell and broke my leg and ankle. My doctor did the testing when I was in my early 70s and found I had it. My dad had it and passed it on to me. Right now I have braces on both feet and legs. My balance is really bad and I have good days and bad. Right now I have a rash on both of the lower part of my legs that my doctor said was because of the small veins being broken. I had the signs but nothing else until now.

Comment from: FinallyKnow, 55-64 Female (Patient) Published: September 11

My Mom has of Charcot-Marie-Tooth disease (CMT) 2. In my 30s (circa '85) I began experiencing symptoms but a diagnosis was not possible. In my 40s ambulatory symptoms worsened but still a diagnosis eluded me. In my 50s the progression was so obvious. I went to a hospital where a national CMT expert told me I didn’t have it. This despite the growing deformities in my now claw-shaped feet. One year later I was diagnosed with it. Don't take no if you're certain. I was treated like a hypochondriac because diagnosis was so difficult.

Comment from: Beating It Melissa, 45-54 Female (Patient) Published: August 21

I was diagnosed finally at the age of 16. Charcot-Marie-Tooth was not a well-known disease for many years. I am now 48 and I have a 21 year old daughter who is also afflicted with it, and my oldest boy appears to have a few symptoms especially in the feet deformity, but not as obvious as my daughter and my symptoms. We work out, stretch, ride bikes and I wear braces for my foot drop, which I started wearing when I was 32 years old. I wear light weight shoes, with my braces; it must not have a heel. I walk better when my foot is flat on the floor (at least as flat as I am able). The braces and light weight shoes have helped me tremendously and I suggest it as well as going to the gym 3 times a week to stretch and work out, it keeps me strong and steady. It really helps. Just don't give up or stop.

Comment from: LaRee Taylor, 75 or over Female (Caregiver) Published: March 17

My daughter was diagnosed with Charcot-Marie-Tooth disease as a teenager. She's now 54 years old and uses a walker but is now having severe problems with leg weakness and balance. Her use of hands is also very limited. We were told at the time of her diagnosis that the problem was hereditary and that I was probably the carrier. Now at age 82 I (her mother) am experiencing gait and balance problems and am wondering if I have a milder, later onset of the same disease.

Comment from: Sherry, 45-54 Female (Patient) Published: July 22

I am currently being tested for Charcot-Marie-Tooth (CMT) disease. I have the Charcot foot. I know that I do not have type 1. I get severe jabbing pains in my toes, and I also get spasms in my feet (both), and my lower legs. My hands are very weak too and very painful.

Comment from: DiamondDeb, 45-54 Female (Patient) Published: July 07

I am sure I have Charcot-Marie-Tooth disease and my lower legs are wasting, and the tendon is tightening. I have balance issues and neuropathy on feet and fingertips, very high arch. I can’t get any doctor to listen and I see the same in my family to varying degrees. Mine began at 43 in left foot, then to right foot at 45, and to fingers. I have to use scissors to open everything and if I bend over I lose my balance. The right tests have not been done and now my 26 year old son is showing signs.

Comment from: slhell, 55-64 Male (Patient) Published: November 07

I broke my right foot while in the army. Since then I have had a problem with my right foot. I went to the doctor after years of continuous problem with my foot and after many tests I was found to have Charcot. I did have a bone infection diagnosed prior to finding out about Charcot. I believe the injury to my foot started the problem.

Comment from: Phil mawby, 65-74 Male (Patient) Published: April 11

I have had Charcot-Marie-Tooth (CMT) disease for about thirty years. As there is no cure I, like all other sufferers, have learnt to live with it but sometimes it can be a struggle because of the constant pain when walking, which I cannot do much of.

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