Patient Comments: Charcot-Marie-Tooth Disease - Treatment

Question:

What types of treatment have you received for Charcot-Marie-Tooth disease? Submit Your Comment

Comment from: olddusty, 65-74 Female (Patient) Published: May 08

I was not diagnosed with Charcot-Marie-Tooth disease (CMT) until last year, at age 72. That only happened because I asked for x-rays of my feet. As a child I couldn't walk very fast or run. No big deal. As I started to age I started to fall and trip a lot. I have seen many doctors including those at a university clinic. No one said a thing. I am now close to being in a wheel chair but I keep going. I can't wear any braces because any pressure on my feet and they hurt. I have bones close to the surface of my feet. CMT has affected my whole body. I am now looking for a doctor to help me manage my disease.

Comment from: MikeG, 55-64 Male (Patient) Published: September 14

As I found out Charcot-Marie-Tooth disease (CMT) is an affliction inherited via your parent through genealogy. I actually made it to 53 years old before an orthopedist I had initial contact with recognized the disease. It was confirmed by a neurologist I also visited at that time. I am now a 60 year old male living with the challenging effect of a poor right ankle/foot and with a lifetime of hand tremors. I have owned three external rigid thermoplastic ankle foot orthosis braces. They help some but not 100 percent. Kudos to anybody researching out a CMT cure. It is great to have contact with other CMT victims through the CMT association.

Comment from: Nicho48, 65-74 Male (Patient) Published: April 01

I have had Charcot-Marie-Tooth (CMT) disease all my life. I have had surgery on my feet, claw toes triple arthrodesis at age 25. No one picked up on CMT despite the limp and foot drop, not until I was 50. I have been a chef all my working life, worst feet for worst job, fortunately my CMT is slow moving but am noticing effects at 65.

Comment from: Budd, Male (Caregiver) Published: July 11

My last seven years I'm starting to get bent over more and can't straighten up at all. I was diagnosed with Charcot-Marie-Tooth disease at the age of 45 years. I am 67 years now.

Comment from: Crystal, 7-12 Male (Caregiver) Published: October 28

I am a mother of 4. My 9 year old Troy was diagnosed with CMT (Charcot-Marie-Tooth) 6 months ago. He walks on his tip toes and has stabbing pains in his feet. He already has nerve damage in his hand and legs. He has to wear leg braces at night to stretch his muscles and every year he has to get casted for a mold to wear on his legs.

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

I was diagnosed with CMT 6 months ago. I have had increasing symptoms for years and finally foot deformities caused me to see a foot doctor, who referred me to a neurologist for a specific diagnosis. He put me on Gabepentin for the stabbing pain in my feet and calves.

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