All of My Life.

Had this all of my life but Dr's up until 2003 said it was "all in my head" UGH! I was adopted within my family and while others have/had it no one had been diagnosed until me. They had all been treated for an array of other ailments from arthritis to carpel tunnel. By the time an emergency room (was there for emergency appendectomy) Dr noticed that something was very wrong with my feet and hands I was in so much pain that all I wanted to do was cut off my legs. He sent me to a Neurologist for the dreaded ENG test and while taking the test he turned the machine up all the way and I could not feel anything - nah duh. FINALLY! A name to my "in my head" pain. It only went downhill from there. First a cane, then a walker then came the wheel chair when my hands completely gave out an electric chair and finally complete bed rest for the entire year of 2005. Then I started doing "a bit" better. I started regaining some motor skills (like walking) then my best friend, helper and husband died suddenly. I went downhill fast again. The one thing I have learned about this disease (for me anyway) is that "stress" is my main enemy.

PLEASE! Anyone else out there with this please get in contact! I know no one else with this and would love to compare symptoms and medications.

Cntryloner Cntryloner
51-55, F
9 Responses Feb 15, 2009

Hi there, I have not been diagnosed, but am fairly convinced that I have one of the subtypes of CMT. My daughter said a very concerning thing to me yesterday. She is 7 and has a healthy active life so far. Yesterday, she said off and on throughout the day she could not feel her legs and they felt funny when she tried to walk. She said they are numb. I asked numerous questions to try to see if any damage could of occurred...head, neck, back, let trauma... and the answer was no. What was iron was the fact that I had talked to a man with CMT that day, and hearing his experience and symptoms I was very interested to research CMT because I have been experiencing many of the strange symptoms that can be found with CMT. I have a history of migraine headaches since I was about 10. I am now 34 years old. In the last few years, I have had sudden blurry or double vision episodes. I have had periods of tingling and numbness in my feet and hands that I can't explain. My hands and feet get so cold and tingly at times that I can't sleep. About a year ago I noticed that my last 3 toes are curling under some, which I thought was maybe from improper shoes. I also get a ringing in my ears from time to time and dizziness. My daughter has complained to me in the last 2 years that her legs hurt or her foot hurts. She has also said she sees weird visuals like colors or can't see right.
All of these things seem to lean towards a type of CMT with mild presentation, I believe. What are your thoughts?

I'm a high school student doing an honors biology project, and it would be lovely if you told me your story of when you had Charcot Marie-Tooth disease

I have it as well. Went from being able to walk 10 miles to sruggling to make it down the block. But you just have to keep pushing laying around will only make it worse. It was called a FAMILY COURSE before they came up wih the name a few years ago.

MusicMouse - THANK YOU for your suggestion, I will be going there directly.

My whole life I have endured moderate pain. CMT has been a very inconvenient up hill battle.Miss diagnosis after miss diagnosis weighed heavy on my heart.At age 26 I lost the ability to work full time and provide for myself.CMT is much worse as a mental ailment then it could ever be as a physical one.I am now 30 and have developed the ability to laugh at myself.A good laugh often helps cure the worst... If I can be of any help to anyone please email me...........I can offer what seems to work for me...................

I have CMT

OK I HAVE HAD PAIN ALL MY LIFE IN FEET AND LEGS THEN WHEN I HURT MY BACK IN 03 I WENT TO A NEUROGIST AND HE LOOKED AT MY FEET AND SAID IS THAT NEW I SAID NO THEY HAVE BEEN THAT WAY ALL MY LIFE I HAVE HAD PAIN IN MY FEET AND LEGS AND THATS THE FRIST TIME C M T CAME UP NOW I WALKE WITH A CANE AND MY HANDS CRAMP

Please.... share.

First, Thank you for your interest in this. The explanation is so long that I will email it to you and anyone else that is interested.