Can someone help my Husband? He's got Charcot-Marie-Tooth Disease (CMT)(Also known as Hereditary Motor and Sensory Neuropathy (HMSN) or Peroneal Muscular Atrophy (PMA)

i was always told i had friedrichs attaxia but now im tols it is cmts ive lost a leg and my other foot is deformed and i lose my balance i am 60 now and ive suffered a lot but hey i am still alive so make he most of it i say life is sweet in any form

Hi
my husband has cmtx and we have recently been on a search for new info. we have found an abundant amount of information recently on cmt group on yahoo. the woman who runs the site is very imformative and the cmta is a good resource also. My husband was diagnosed in his early teens and his whole family suffers from it. Each one of them presents slightly different in the atrophies. oxford university also did a study on his family. My husband is 49 now and the condition has taken his hands but his very adaptable. its very frustrating and you have to just keep reminding him that your there. Good luck to you and hope for the best.

hi im 26 and have cmt ive been doing my own resarch through books and the internet for quite a few years.One thing that recharges my feet is hot and cold water treatment. I stand both feet in really cold water for 10 secs then switch to standing in red hot water for 10 secs, reapeat 10 times. Done! to add intensity repeat as above but with whole body. I would also recomend switching to a vegan diet and doing juice flushes and other intensive natural detox's. You will find all of the substances people are mentioning such as c0q10, b12 etc, are all found in natural foods, much fresher much more potent. You will find all those tablets useless trust me ive tried. Practice Yoga, eat superfoods, eliminate junk food and chemicals, cleanse every organ in your body individually then flood your body with vitamins & specific herbs. I find it hard to stick to this diet and routine regularly so i have ups and downs but when i do stick to it and put some hard work into it CMT diseapears into the back of my mind. Don't expect a pill to cure anything! Treat all of your body! do your research, no one ever achieved anything without working hard. Love, Jason,

Hi all,

I am 40 and have had symptoms of CMT my entire life. Most noticeable was toe cramping and severe arch pain. I have an extremely high arch and hammer toes.
I was only diagnosed a few months ago after complaining to my doctor that I had burning pain in my left leg and wondering if it was due to surgery I had on my knee (lots of knee pain and nothing showing on an MRI, he removed inflamed tissue). When I went to the neurologist, I mentioned that my left hand had been numb for months and I was feeling numbness in both feet in addition to increased toe cramping.

I was put on Gabapentin by my neurologist.
I now take:
1200 - 1800mg of Alpha Lipoic acid (antioxidant)
Infla Thera (anti inflammatory)
Phyto ADR (promotes healthy adrenals)
NAC (glutamate scavenger, replaced Gabapentin and no dizzy side effects)
Taurine (similar to NAC)
DHA (fish oil)

Even though I have only been taking these for about a month, I am having luck with this. The toe cramping and arch pain is much less frequent. I don't have as much of a problem picking up pots of hot water to drain them anymore either.

I hope one day we can all live symptom free (my 2 Boys have been diagnosed as well).

Kathy

Hi Craig - Thanks for writing and sharing your story. I was wondering if you have been able to find any good online support groups that you would recommend to others? I seems like it would be helpful to be able to share information with others. Pat

Hello,

I have CMT too. My problem started when I was about 4 or 5. My feet began turning in the way and I developed a high arch. Throughout my childhood I had a number of operations to correct my feet including two steindler releases, an ostiotomy, and a triple arthrodesis in each of my feet, aswell as fusion surgery on my big toes. My last operation was when I was about 16 and i'm now 26. The triple arthrodesis really helped to straighten my feet, they have never turned again. I walk with more stability then i used to, but my feet have been fused so much I only have a 20% movement left in them. This just means i have to walk slower and be more careful. My muscles in my calves especially are also quite wasted away. I think this disease works differently for most people, but this has been my experience and i have managed to live through it. I hope your husbands ok.

Craig

I have CMT all my life. I will be 39 and I am still able to walk with the help of afo's . CMT has thought me to always adjust for change. I have been to shriner's hospital for kid as a child who reformed the shape of my feet so I could fit in shoes, it was the MDA who typed me as type 1A CMT(I wanted to know this because I have children now). Type 1A is a 50-50 shot of inheritance. I have cried as a teen who didn't want to be different and I go mad at those who took it easy on me. I am working on my fourth career change without any Gov. help. I would not be able to do this without my God, my wife and my family. I know I have it good because someone my have it worse. We are the best employees to have because we always give it all we've got. Those that are fit dont know the meaning of hard work. Dont give up and know that it is God and family that matter most. It matters not to them what shape your body is in. It is your heat and mind that matters most and with that you can do all things.
jobs I've had

As a teen:
stock boy
pizza driver
medical records clerk

temp jobs
target
tire changer for sears
machine shop
transformer dismantler
fork lift driver

young adult to now jobs

heating and air tech
maintenance tech
real estate broker
powder coater
soon to be truck driver

final goal
to own enough real estate to support retirement and
have my own shop were I can be creative

I suppose I am the youngest person to post here, which makes my position relatively unapplicable to your husband. But, perhaps, I can share some of the knowledge I have gained.

I am now 20 years old, and am going to a college in Chicago, IL. Having grown up in Southern California, the weather is a big change! This is my third year, and I still have yet to determine whether my condition is simply changing due to age, or whether the temperature has had a permanent negative affect on my ability to function.

I was diagnosed with CMT at the age of 8, after my Mom was tired of me "dancing" around on my toes all of the time. I was very fortunate that the doctor who saw me actually knew what CMT was, or else I would have been diagnosed and treated for MS. I have had two surgeries on each foot, the last of which actually changed which tendons (and thus, which muscles) control various parts of my foot, to compensate for muscular imbalance. That surgery occurred four years ago, and because of it I am still able to walk.

When I was 14 I had a blood test done to make absolutely certain whether I had CMT or HNNP (Hereditary Neuropathy with Pressure Palsy), as that would have directly affected whether my parents allowed me to do anything related to sports. I have never been very athletic, except having danced my whole life, and was able to join Color Guard in HS after finding out I have CMT Type 1A, which is the most common.

It's been hard, having realized how much about my future is uncertain. Despite doctor's thoughts otherwise, I was a successful member of my Color Guard for nearly three whole years, and enjoyed it immensely. CMT caused me to drastically lose my reflexes in my hands, which ultimately affected my ability to compete. I also originally came to college to major in Architecture, but after only one semester realized that my hands do not have the strength to create the required models, in the given time, and didn't want to take 8 years just to get a B.Arch, when I could take 4 years to get a BS. in Civil Engineering. I am fortunate that my brain works well with math, as well as art, and I intend to use that to my advantage.

There are a lot of things CMT has taken away from me over my life, (including to be able to dance for more than two songs) though it is just the start, but many more things I have been given or able to learn. I have gained true friends, because they have all been tested with my inability to be 'normal' at any given point in time, and my regular need for help. CMT even helped me meet my wonderful boyfriend (I asked him to open my water bottle! awww), who is the most incredible encouragement, and always helps me remember that God made me beautiful; and that not being able to do something will never change that.

Life always takes its turns, and it is really easy to become discouraged when you look at all of the negative possibilities that other people have had to face. But the beauty of CMT is that it is different for everyone, and it still allows you to maintain the most important part of who you are: your mind, your heart, and your willingness to be more than your body will allow you to.

I have struggled with feelings of inadequacy due to CMT, certainly, but I am still able to live outside of my parents' home, inside of their love, and in the midst of friends. I am still able to show my intelligence and strengths not relating to physical strength, and there are more and more gadgets every day (and plenty of people) to help with those physical strengths I don't have, or am losing.
My legs hurt progressively more, and my handwriting is becoming somewhat slower and more painful, but one thing I have learned is that the brain is a powerful thing. I have re-ordered my pain tolerance several times in the last 8 years, in order to live without constant muscle pain or headaches relating to constant muscle pain. I have also re-gained (most) of my hand reflexes that I lost 4 years ago, because my brain has done the compensating for me. And I have been able to get up every day, stretch my legs so they are walk-able (albeit with pain) and continue on with my life.

God is good, and this is not the end.