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 don't know how long ago this went up but some words of encouragement. My father was diagnosed with CMT in his early sixties. He noticed that he became progressively more unsteady on his feet, and soon had to stop fishing in rivers. He lived happily and busily till age 86, still able to walk about and tend his large vegetable garden. He suffered no pain in his legs, only unsteadiness. It is really not the end of a life, this condition.

Hi everyone. Here is my story.....
I am a 33 y/o male and was diagnosed in August 2008 with CMT by a nerve conduction study. I've had increasing pain on the bottoms of both feet for about 7 or 8 years now and thought it was related to plantar-faciaitus. Even though I am very clumsy, I do not appear to have any motor involvement, just sensory. My neurologist tried me on 20mg of Lyrica, it didn't help and made me very tired. Then we tried 60mg Cymbalta and I've had great results! I'm not 100% pain free, but I can stand up for more than 10 seconds. I dread the days when I forget to take the Cymbalta in the morning.

Alternative therapies I've tried is CoQ10 for a couple months (no difference). I was also sent to PT using a machine called Anodyne. It is an infra-red therapy device and it REALLY helped over successive treatments. I only had about 7 or 8 until I stopped. You can buy Anodyne units for $800 refurbished or on eBay. The pads strap around your feet with velcro or they also have add-ons for legs. Hopefully someone will come up with a cheaper device soon!

Hello, I have been building a blog that will probably turn into a web site one day to help with resources with CMT. There are so many different things that could be associated with CMT and so many things you need to be aware of. The drug list is a great example of drugs to stay away from. Come check it out.

http://livingwithcmt.com

Hi, I'm 21 years old and have been diagnosed with CMT. They think it is type two. I've shown symptoms at a very young age (4-5-6 yoa) for what has shown to be a mature disease. Reconstructive surgeries have been done to both of my feet and one of my knees. It was just operated on a month ago due to the fact that I chose not to take in the inevedable sitting down and have blown it out hundreds of times beyond proper function in attempts to try and keep active (sports, biking, walking). When I was younger I always knew I'd be the one to figure out the cause of all this struggle so many people with; specifically CMT, and other types of nurapathy (don't know if I spelt that right:) endure. The pain came so early that I didn't have the option of taking painkillers (thank God) so, now I don't even feel it any more except when I dislocate joints due to the fact that the muscles holding them in place haven't even had a chance to develope proper never mind degenerate (though they do of course). I dropped out of high school due to severe depression and lack of motivation and now I'm about to have a daughter that has a fifty percent chance of entering the same life struggle I did. If there's any justice in the universe I'm sure she will be just fine though. I've tried so many different things and I've found that daily stretching (AS MUCH AS YOU CAN) can't stress that enough. Cut hydrogonated oils (espesially canola oil, It's in everything and it's the worst google it you don't trust me) and supply yourself with plenty of vitamins. Vitamin E I've found works wonders and NON-hydroginated seseme oil rubbbed on after a shower helps mobility more than you can imagine (obviously not the smelly kind *ick* and it sinks in well enough to not stay oily, It helps cleanse muscles and skin). I'm no hibby dibby hippy tree hugger and I don't condone senseless therapy but these things are signifigantly improving my overall health and abilities. Canola oil causes long term effects that the Canadian government openly paid the FDA to overlook and every single one of the symptoms it causes are identical to muscular nuropathy. Why is there no wonder drug or cure as of yet? Because there will never be one. Canola oil is a multi billion dollar industry and if they told you that it causes people's myelin shealth to continually and slowly deteriorate then it would have to be pulled from the shelves or be sold with a warning label attached. They don't even sell it in Europe any more (can you smell bad meat??), due to the fact that it caused MAD COW DISEASE. This isn't a corporate slandering of the hydrogenated oil industry though. I'm just trying to say that if you're going to try and fix the problem figure out how to do it practically without having to take as many extreme measures as possible. Keep active, walk, get a treadmill, stretch and try to keep your nerves healthy. Look up nerve structure and educate yourself on what they are constructed of and all of the major functions affecting them and you'll find that knowing this will help in your journey to a healthy recovery. The effects I've found are not irreversible like a lot of doctors and people who don't live with the problem have grown to initially believe but, it takes a lot of dedication and insight to overcome. Disease is a predilection to certain symptoms and the only way to avoid further problems, which is vital to know in order to recover from it's effects, you would have to find the key influence that is hindering your functionality. In my case I've found a healthy raw vegetable diet and some experimenting with vitamins and supplements has shown to be most effective for myself but, everyone is different I guess and well the similarities in symptoms from one nuropathy to the next may make all the difference in the world. I'm obviously not a doctor but, I've seen thousands and the person who has made the biggest difference so far wasn't any of the PHD holders (God bless them) but, instead it was my own discoveries. Search for answers and eventually all things willing you'll find them.

Hi, I too have CMT. I take 1000mg of vitamin-C and 300mg of ALA (alpha-lipoic acid), morning and night. I stopped taking the ALa for a couple weeks and generally noticed my hands being slightly weaker, so have started re-taking it. I have read about ALA helping other people too, though not sure if any proper studies have been carried out?

This diease is very hard for one person to tell another person about because it is so different for so many people.. I am 21 years old and have had 2 surgeries in the past year for my CMT. My feet hurt so much worse now then they did before.. I can barely walk in the morning and have trouble with my feet swelling to twice their normal size. I would do some different excerises at home to try and see what works for your husband.. The one that i have had the most success with is.. sit on a flat hard surface and take a bath towel, put it aound the bottom of your feet around the balls of your toes and strech you achealis tendon the mroe you do that the easier it is to walk. THe surgeries are not for everyone. I did it to hopefully make my feet better. I wanted to be able to have waht ever career i wanted and to have children. It looks like for me, I have to have a job where i sit at a desk and When i have children I will be on bed rest due to the fact my feet will not be able to support me. I also recommend the sports braces. they support your feet and ankles more, less falling and your feet are less sore.

I hope something here helped you!! Just remember your not alone

My Husband is so appreciative of your willingness to share your information and resources. He has read everything you've shared with him and he is very grateful.

Here's an email he just sent to David, who posted his story about CMT. I thought this was something you might all like reading.

Ed has been a big supporter of EmpowHer, but he had no idea the power of what we have created here with our strong and ever growing community. He now knows how powerful our site is. What all of you have said to him has been so helpful. He does not feel alone anymore. He feels like he belongs to a wonderful network of people who share his condition from all around the world. It's very comforting and healing for him to know that he is not alone. Thank you for giving him that sense of belonging and validation. That's what we all hope to have as we go through our own health challenges.

Dear David,

I'm emailing you on behalf of my husband, Ed. We are sitting here in our kitchen in Phoenix, Arizona. We are so thankful to you for sharing your story and resources with us. We're still trying to decide whether or not Ed really does have CMT. He has your wonderful persistence and zest for life. He asked that I email you to thank you and to tell you a little bit more about what happened to him. And to ask you if you have any of the same symptoms.

He's sitting here dictating this email to me. He's plenty able to do this himself but he says I type faster then he does. So here goes....

I'm 78 years young and have been active and healthy my entire life. Sports has been a big part of my life (Team USA and Olympic Team Hockey) baseball as well as tennis. The weakness in my legs occurred in 1995 after having prostate surgery. The symptoms increased after contracting a staph infection in my lower spine after a back operation. At this time, I have difficulty standing up at cocktail parties and it's very difficult to walk any distances. Leg fatigue and leg weakness seem to be the two main symptoms I have.

Like you, I have been swimming every day for the past six years. I believe it's helped me be active and stay fit. I still go to my office every day and we continue to travel which is something I've always loved to do. I've spent my entire life working hard and taking good care of myself. It seems most of the posts my wife has received on her website don't sound like my symptoms. And a lot of the people posting were diagnosed at a fairly early age, like you. That's why I'm wondering if you have any of my symptoms? It leads me to believe that maybe, just maybe, I have something else going on with me. I do experience balance issues but that's not a major symptom for me.

I want you to know, I've been to many doctors and have found a doctor in Palo Alto that I highly respect. His name is Dr. Jeff Saal. He's a back specialist but does not do surgery...just consults on surgeries and takes much.more of a therapeutic approach. He says, if I do have CMT, he does not believe that I will ever lose my ability to walk. I trust him with my life, since he was so helpful to me when I contracted staph.

Would you mind sharing with me the name of your doctor in London? We have a daughter who lives in London and we do go see her several times a year.

Thank you and warm regards,

Ed Robson

I'm 41 and was diagnosed with CMT when I was 26. Up to that point no one in my family knew that we had it in the family; previously it was either misdiagnosed or in some mild cases not noticed.

I have made it a rule not to read about CMT on the internet or join any newsletters, forums; I did so to start with, but found it too depressing. I was just looking for information about stem cell research and came across this page.

In the 15 years that Ive known Ive had the disease, Ive lived an extremely active life - with homes in London, Asia and Africa. Ive made no attempt to modify lifestyle - in fact, the opposite, as I was determined to be able to retire young, through hard work. In London I ran a number of companies including a 100 man finance company and a tv production company. Last year I did indeed retire and now live in Sri Lanka.

I do not know how severely I have CMT - what I do know is that about 4 years back my balance started to become so poor that I thought I'd soon have to stop work earlier than intended.

I was then introduced to a guy in Morocco who does acupressure, in his own way. Through treatment from him, my balance improved radically. The treatment was very painful, and I have no idea if it is permanent - he says I need to see him ongoing every 4 to 6 months.

I went back to see my neurologist in London - the top guy in the UK on CMT and other neurological conditions - he was amazed at my balance. I do not have obvious significant improvement to "form" but actual use is fantastic.

I swim 60 lengths a day and walk for an hour with my five dogs - I dont get tired. My guy in Morocco encourages me to do other sports, mildly. This from a state where if I stood up, I would need to hold the table to ensure I didnt wobble too much.

Im thankful for the radical improvement in my life quality. I have no idea though how effective the same treatment would be for anyone else.