Charcot-Marie-Tooth Disease Support Group

Actually here is the correct link to my youtube page for CMT disease. please check it out and subscribe. https://www.youtube.com/channel/UCB2vgK-fp_ctRrav-3-rJvw

Hi, I just created a new youtube channel and the effects of cmt disease on me. Here is a link to my channel. I will be uploading more soon. https://www.youtube.com/channel/UCB2vgK-fp_ctRrav-3-rJvw

Hi am wondering if theres anyone out here with drop foot that could get intouch with me. I had my 2nd back surgery and came out of it with drop foot having a really hard time dealing with it all. If theres anyone that has it would really like to talk with you about it... Thank You and have a wonderful day...

I recently joined Daily Strength as a way to search out others who have lived and struggled their whole lives with CMT. I have experienced the many kinds of physical losses you have lived through in your own life times, and the loss of past relationships. I have read through many of the discussions in the CMT area and agree with many of your insights. As a young man I too wanted to hide my...

Just wondering if any has had an success with diet? I am thinking that the anti-candida diet- no yeast, wheat, grains, dairy, sugar etcis highly effective with reducing pain and inflammation, and the yuk feeling.... but then i feel so faint that I can barely function.any suggestions to boost energy and blood sugar ?Thank youMeera

Hello.It took my two neurologists 10 years to finally diagnose me with CMT.I started going to see them at the age of seventeen, and finally I have some answers which is a relief.According to my doctors I have a serious case of this disease and it has progressed quicker than most people they've seen with the disease.My main question is how do I deal with falling down all the time? The docs told me...

Hello all, I'm looking for general advice from folks who might have been in my situation before. If you're not interested in the long story, look at the bottom for the "too long; didn't read" (TL;DR) tag...I'm a 40 year old male with CMT (1A). Symptomatic onset (pes cavus, atrophied lower legs) was around age 10 or so and diagnosed by an especially astute pediatrician. Years later, both my mom...

My youngest brother has cmt 1a. I wanted to ask what are some of the long term effects for cmt ? Does this also effect the learning process? What is some advice you would give a parent for raising a child with cmt 1a? Thank you for any advice given. I have done some research but that has only gotten so far. Thank you again and have a nice day

Last night i was searching the internet about CMT and arm pain and this article came up... " People with CMT often lose some sensation in their feet and hands. The lack of sensory feedback to the brain may affect a person's ability to feel normal pain. As a result, minor injuries, such as a blister on the toe, may become infected without notice.Although Charcot-Marie-Tooth disease typically does...

Hi All,It's been a while since I have written.. hoping everyone is doing ok! i am still plodding along.. just! I am about to go on a gluten free diet and wondered if anyone else had discovered anything about the link to gluten or diet.I recently went on a saturated fat free, sugar free and wheat/yeast free diet..... consequently I was eating dust! Nothing else left :) I felt fantastic , reduced...

If anyone has been genetically tested for CMT, can you tell me how you did it? I need to be genetically tested for CMT however Athena Diagnostics wants $12,000 up front and I don't have it. Does anyone have any suggestions?

Hi all! Well I do think I might have CMT or some like it.I have the wasting away of the muscle in my legs that are bowed,very skinny calves and bony feet,except my feet are completely flat not arched at all.From my elbows to my hands I'm very bony.I also have had extreme burning/electrical nerve pain in my bones of my lower limbs.I also experience lower back weakness/pain and often waddle side...

Last weekend my wife and I attended the CMT conference at the Holiday Inn in Orlando. this was my first time attending anything like this that was for CMT patients. The conference was wonderful, over 300 people were in attendance and the speakers were fantastic.We were able to get so many of our questions answered and no longer feel alone with this disease.I encourage everyone to join the CMTA...

The CMTA will now be offering monthly Webinars! This new feature offers just one more way for us to connect with you and the entire CMT Community!Our first webinar will be held during CMT Awareness Month, on Monday, September 9th, from 10 am - 11:30 am EDT. The guest speaker will be Dr. Michael Shy, Director of the CMT Clinic at the University of Iowa.Dr. Shy is one of the foremost experts in the...

On Saturday November 9, 2013 CMTA is having a family conference in Orlando Florida from 8am to 4 pm. The cost is only $50.00 per person and it looks like its going to be very informative. You can get information by calling 1-800-606-2682 or on line at www.cmtausa.org.