Charcot Marie Tooth

[BubblesRelena]

Does anyone here have Charcot Marie Tooth disease? I have it and I was just wondering if anyone else here does.

~BubblesRelena

 

[georgia123]

I have cmt also. My father and both of my sisters have it too. Several of my cousins also have it. Some of us have mild cases of it, while others of us are totally disabled by it. I just had to go on disability this year. Some days are worse than others but some days aren't to bad at all.

Georgia

 

[BubblesRelena]

Yeah? I got it from my father. So far we're the only ones really in the family who has it. He got it from his mom, but his father and mom divorced when he was two. So he had to grow up not knowing what it was or anything. He's been on disability since the age of 18, it's that bad. I'm not on disability, I'm going to college. I used to have to wear AFO's but when I was in elementry school I got stubborn and refused to wear them one summer, my foot docture (sp) was telling me that my legs were doing great, and then I told him that I hadn't been wearing them. He got mad at me and made me wear them, but it made me think. If I kept wearing them I'll become dependent on them, and if my legs do better without them, then the leg braces were moreso crippling me than helping me. I haven't worn them for about five years now and I'm walking fine (I used to tip toe but not anymore). Have you had to go through any hard things with your CMT? I bet it was nice to have sisters to talk to about it. I have a brother, but he's normal.

~BubblesRelena

 

[lisarn]

I know of a few people who have it through the MDA since my son has Duchenne MD.

Do you all get any support through MDA? They have been helpful to us.

 

[georgia123]

The MDA is wonderful. The help us out in many ways. With so many people in my family having it we have a pretty good support system. What I find amazing is how this disease affects everyone differently. Bubbles you are the only one I have ever heard who got better. I have never known anyone who was in braces to be able to get out of them. I haven't been through any of the really bad stuff yet, praise God. My father has though. He can no longer dress hisself, his fingers and hands are relatively useless. He falls all the time. I can see the signs for me but I am doing not so bad. I am on disability and I miss working, but compared to other people I shouldn't complain.

Georgia

 

[BubblesRelena]

I think that part of the reason why I got "better" (even though clinically I haven't) was because I started wearing braces and treating my disease at a very young age. I was still growing. And at first the only problem was the fact that I walked on my tip-toes, and my keelesetendant (sp) wouldn't grow. So when it did, with help of AFO's finally grow/streach out, and then realization about being dependant on the AFO's hit, I decited to (while my body was still growing) do things to preserve my body. It also helped a bunch that God was indeed blessing me and being on my side. I think that God kept me, and will keep me, from being too bad in the disease, as long as I am faithful to Him and as long as I serve Him. Sometimes God keeps little thorns in our side to keep us in prayer, humbled, reminding of Him, etc...I mean, if everything was perfect in everyone's life do you think that everyone would pray? Why would they need to...everything would be perfect. God keeps things around so we can/will continue to talk/pray with/to Him. My disease is better than before, but God keeps it there to keep me humbled, to keep me to remind of what God kept me from (the even more wore parts of CMT), and to keep me in prayer and a relationship with Him.

I haven't worn my braces in about 5 solid years....but I did notice during that time, that when I was struggling with God, or didn't follow Him or something like that...my legs bothered me more. It was God's "leash" on me. To keep me on track. To some this might sound "horrable", but I love it, and I think that it's great. It's God reminding me of what He's done, and keeping me from doing wrong. I now know what It means to be "God Fearing". ^.^"

Love N" Huggles,

~BubblesRelena

 

[georgia123]

That is a wonderful testimony of God's healing power. It truely was God. I have this disease and have studied this disease and I have never met anyone who got better. God has truely blessed you.

Georgia

 

[jewels39]

Hi everyone,
I've just joined this forum. I noticed posts about CMT Charcot Marie Tooth. I was diagnosed with CMT type 2 this year. I have good days and I have bad days and sometimes I have really bad days. There isn't too much that's great about CMT but for me it was a blessing in disguise. It brought me back to God! When I found out I had CMT I really felt alone and wanted to pray. I had so many questions. Since then I am learning and finding a new life with God and for that I am so happy. I just wanted to pop in and say Hi to everyone.

 

[KagomeShuko]

What exactly is CMT? My dad had a Charcot Foot and ended up having to have his leg amputated because of it. In fact, his other foot is a Charcot Foot, too, but that one didn't get as bad. So, he still has one leg. I was wondering if CMT and Charcot's Foot are in the related symptoms/disease/whatever they call them.

Stein Auf!
Bridget