Charcot Marie Tooth Disease

[livingwith]

I was diagnosed with CMT when I was 42yr. and this was after I had open heart surgery. This disease has been very life altering for me as I can no longer work, and am now permanently disabled. I have worn leg braces for the past 9 years, and even now they do not seem to do what they used to do for me. They do allow me to walk, and I can drive, but long walks are very difficult. I take medications for this disease, prescribed by my neurologist, and they are neurontin=500mg,+5each day, and amyt...Read the full article

[kasales]

Danny,
It seems like a lonely disease. I do not know of anyone who can relate outside my family. My friends have no idea what it would be like to suffer each step and feel great weakness most days and have a few days of stregnth. I have most my life since early childhood been stared at every time I walk by others.
Each day is valuable and we are too. Don't give up:)
Kathleen

[Debra W]

This is a very lonely disease. My daughters look at me as if i am just being lazy when they want me to go shopping with them. They have no idea what it is like to walk on your affected feet!! I feel as if i have blisters on the bottom of mine all the time. My disease has progressed very rapidly. My last EMG showed that it has progressed to my knees and starting in my hands as well. As yours, it is genetic. From my moms side of the family. I have only had this disease about 5 years. I can truly say i am afraid of what is down the road. I still work about 50 hours a week,but, it is getting harder each day to keep up with my work schedule. My neurologist told me to " Get my ducks in a row". I think i am in denial that is is not going to get better. That is why he made that statement to me. He told me he would agree with me if i chose to get on disability. I am just not sure how to even get started. Until i was diagnosed with this, i had no idea what was wrong with me. I as you have arthritis. I take Lyrica 150mgs. 3 times daily. The neurologist had me on Cymbalta as well, but, discontinued it because it was not helping. I also have Lidocain patches that i put on the bottom of my feet when i go to bed. Do you ever have 'PITY PARTIES"? I don't like giving in to them, but, sometimes i just can't help it. My husband tells me he understands how it feels, but, no one understands this terrible affliction, unless they themselves are going through it. Do you ever have times that you would prefer being by yourself, rather than having people around you all the time? I don't think they understand that you just have trouble getting around. I refuse to use a cane, even though sometimes it would help me. Thank you for sharing your story and listening to mine. I didn't know there was a web site about this until today. God bless you and your family!!

[kasales]

I have not really taken anything for CMT. I find vitamins Triamin which have magnesium, calcium, and potassium help keep muscle cramps away. I have had the effects of this disease since middle school. I had surgeries on my feet in high school to help and correct them. Which was a God send. Know my knees are getting weak and giving in when I try to stand still. Standing in line or anywhere is really difficult. I am only 35. I find the biggest freedom when I see my horse. He makes me laugh. I have spent time training him and when I ride he is my feet. It is almost like flying. I also enjoy biking on trails. Anything besides walking!
People take simple things like walking for granted. My husband has been very supportative and he recently recovered from a broken wrist and was struggling with mobility in his wrist and thumb. He said with that injury he could almost relate to how I must feel. His thumb and wrist would not bend like he wanted them too and he was fearful of always being that way.
I am trying physical therapy to stregnthen my feet, knees and hips. I am hoping to see some progress. Most importantly is never give up. It is really difficult but I will never give up.
Kathleen

[Bebba]

This is my first time that I have shared my story with total strangers. I had my CMT symptoms when I was in middle school, but everyone just thought I was clumsy. I could not participate in many of the activities that we done in P.E. I had many sprained ankles. I had reconstruction surgery on my right ankle in 1990. I was only diagnosed with CMT after my father had gone to the doctor for headaches. The neurologist told him if he had any children that had feet that looked liked his to be tested. My oldest brother and myself was tested and diagnosed in 1992. As a child I remember my father telling stories that he couldn't march in the Navy so he was in the Sea Bees. He was a Baker 1st Class. Also, I remember that he would always tell the grandchilren, "Don't step on Grandpas feet." He eventually was in a wheelchair and couldn't walk at all. He passed away in 2004 of congestive heart disease. My brother is 62 years old and I am 49. We both wear leg braces. His daughter is 32 and she has braces but won't wear them yet. My father had lost contact will all of his family, but in 2002 he finally wanted to talk to his sister, so I called and got ahold if his ex-brother-in-law, and he said that Ann (my father's sister) had passed away 4 years prior. She had CMT aslo. We now know that one of his brothers had it and also his niece. I go to the MDA clinic in Indianapolis and they paid for my first set of braces and a pair five years later. It took a long while for me to realize that I couldn't work, and went on total disability. My brother is also on disability. I take Neurontin and Darvocet for pain. There are days that I want to have a pity party but God has brought my through not ony this, but also, Heart disease, a very rare blood disease called Wegner's Granulomatosis, thyroid disorder, and osteoporosis. I still sometimes find the energy to sub at our middle school. It still gives me a feeling of satisfaction to be around the students, but gives me the freedom to only work on the days that I choose to work. CMT is a disease I think that works also on our self esteem. I found that we don't do as much with our friends as we used to because I can't do the amount of walking as I used to do.
But I refuse to give up!
God Bless
Bebba

[Debra W]

I as you, have never "talked" to strangers before about this chronic disease. I do believe it is good therapy to relate to someone who is feeling the same pain as yourself. My heart goes out to you. I can't imagine having this disease for such a long period and yet having such a positive attitude. Good for you. I know sometimes when we have our pity party, you feel as if you are all alone with this with no one understanding how you feel. It still amazes me when i do go shopping with my sister and daughters how fast they actually walk and i am struggling behind. Thank you for sharing your story. I do believe it does benefit everyone including ourselves. God bless you and your family!