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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)

By Expert HERWriter December 7, 2008 - 7:23pm
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I'm desperately searching for answers for my husband, who's been diagnosed with a very rare neuropathy, called Charcot Marie Tooth or CMT. He was diagnosed about 7 years ago and it has affected his legs, calves and feet. He's having a hard time walking now. Even though we know it's a progressive disease, we know little more then that. One things for sure...it's getting worse. He's losing his ability to walk. He's such a vital man and to watch this happen to him brings me great pain and sadness.

Ed, was adopted long before you could find out who your biological parents were at 18. We have no way to get his family medical history. Believe me, we've tried more then once to get the records unsealed but, so far, no luck.

I would love to be able to find out what new treatments, exercise regimes, supplement programs etc...are out there. I'd love to know what others are doing or taking that's helping them. I'm afraid that he's going to lose his ability to walk at some point if we don't find someone, a doctor, a survivor, out there who knows this horrible condition. Any research or science information anyone can give us would be greatly appreciated as well.

This is just another example of why I created EmpowHer. I know others are faced with this condition or have loved ones who may suffer with it. Maybe you know of a neighbor or friend who's being treated for CMT.

Any help you can give us will be welcome and most appreciated. I think EmpowHer is going go help Ed. In fact, I know there are women out there who are going to help us get the answers we need. I'm sure of it.

Thank you in advance for any help you can give us. Please share this post with others. Maybe they'll know someone with this condition and can tell us how to better manage it.

Best in health,


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EmpowHER Guest

I have CMT 1B as does my grandmother, aunt, uncle, mother and twin sister. My sister and I had symptoms starting in our late 20's, which was later in life than our relatives. It's an annoying disease, but its not fatal, and, for that we are thankful. It's actually not as uncommon as people think and there is a huge online support through the CMT Association website CMTAUSA.ORG. There is anything and everything you need to know about CMT. It's a lifesaver.

July 16, 2015 - 5:13am
EmpowHER Guest

My husband has the disease as well, he was told at a young age (he 55yrs old now) that it only occured in first born males. Both his mother and father had the disease as well as other unknown congenital deformities. He was told in his 20's they should never had children. His mother went on and had five more children. None except him had this horrific condition. My husband was foster out at the age of three, and he remembers wearing leg braces, his sister the next in line and the third youngest were put into a home, before the age of five (too hard basket), for the fostering agency at the time. He has a son (34yrs old) whom he hasn't seen since he was 6yr old (it must me heartbreaking for both of them), and his son has the disease as well and that's what made my husband think that it was the First Born Male Syndrome. He now knows it is common in both male and females. He himself was the byproduct of two people that should never ever have had children, in his own words in those days 55yr ago it was all ignorance and too hard for the medical profession, but now thanks to modern technology he is actually able to find out and more than willing to share his experience with others including medical (doctors, specialists etc). He has a wealth of knowledge about every single symptom. He is disabled but still carries on day in day out occupying his mind and his body doing things he likes to do, it is slowing him down but he still forging ahead. He has a extremeley strong mind and personallity. With all of this going on he still has the time and strength to look after me. He is my carer, husband and best friend and wish I could do more to help him. His motto is (Never say die) figuratively speaking, onward and upwards. He has such a brilliant mind he looks upto Stephen Hawkins (MND) and he will not let this beat him. Kind Regards Rosslyn

August 7, 2014 - 5:33pm
EmpowHER Guest

Look up Bernadette Scarduzio on Facebook or YouTube. She filmed a documentary about CMT and has helped inspire many with the disease such as myself. She posts many sites where you can get info and can add you to the CMT support group via Facebook upon request. Hope this helps.

July 30, 2014 - 12:59am
EmpowHER Guest

I have suffered from CMT my entire life. Like most it is rarely diagnosed during onset. Problem I found was I always thought I was different growing up since I went to doctors and no one knew what to look for. I walked fun, couldnt run or jump it was only until after college didI find someone to tell me what it was.

Problem the disorder has is its neurological, skeletal, muscular. So finding one doctor can be difficult. There is no cure for it. There is a list on the CMT site which lists things as "toxic". Which excel the disorder. CMT patients should stay far away from them. Such things as nitrous oxide from dentist is rated by severity on the list as well as everything else they find that can speed up the loss of abilities.

If you already had the genetic testing which will tell you what chromosome(s) are effected they will tell you what type of cmt your husband has. Like many said next step is a neurologist but they will just keep an eye on strength of muscles and hook you up to (emg?) the one where they send shocks thru your body to two points and measure how long it takes the nerve impulse. They really cant due much more then that and i have stopped going to mine.

There is no clear insight I can give you on what lays ahead for your husband. From what i understand its different for each patient. I do know they say its important to stay active to not lose muscle mass and try to keep the flexibility.

One of the tell tale signs of cmt is the gait in the arch and the curving in of the foot and the claw toes. I wear high top sneakers everywhere for ankle support. Boots are a good option but usually cmt patients have strength problems in the foot and trip on a line in the sidewalk so boots may prove to be too heavy and lead to falls. I went thru a foot fusion. I had 3 large screws into my heel trying to fuse the ankle in one place but that didnt work. If that is a route you may take just remember most cmt patients have been walking the same way with the disorder their entire lives and any change of that will cause stress on another part of the body. Foot fusions have been known to lead to knee and hip replacements. A less aggressive way is to get prosthetic you wear to support the ankle. I have worn ones that fit in the shoe and go up to the knee to ones that just go to the ankle.

I am sorry to hear about your husband. They have recently started really studying the disorder. For years it was never mainstream. They are now compiling a database since it is hereditary and the awareness is growing. It is life altering but not life ending. I do most of the stuff i did as a kid but now i just do it in moderation. Moderation is a key.

July 10, 2014 - 6:26pm
EmpowHER Guest

hi has anyone with cmt felt very weak after having a child.. much weaker than before pregnant and did you regain your strength back.

June 17, 2014 - 8:41am
EmpowHER Guest
Anonymous (reply to Anonymous)

Yes, my symptoms progressed significantly after having children. I'm also much more fatigued.

July 16, 2015 - 5:16am
EmpowHER Guest

I've been reading many sites talking about it...cause, diagnoses, treatment, doctors who treat it, etc, etc. I can't believe that you can't find info on it.

May 20, 2014 - 4:38pm
EmpowHER Guest

I have CMT type 2. My condition improved when I stopped using artificial sweeteners. A friend was talking about how much better she felt since she stopped drinking diet sodas, and I decided to try that for myself. What a surprise it was when my hands started getting stronger! I'm still impaired, but it was a significant improvement. I guess some people are just more sensitive to certain substances.

March 9, 2014 - 7:34pm
EmpowHER Guest

mine started when I was 14 I wa s told it was friedrichs ataxia and eventually they cut my foot off after performing horrendous operations on my feet trying to correct the deformeties it was not until I was 59 that ythey diagnosed cmtd so my life was ruined by misdiagnosis

September 22, 2013 - 1:35am
EmpowHER Guest

I also have CMT. I was diagnosed in 1972 at 10 yrs old. I'm sorry to hear about your husband's. Difficulty. I have also experienced the progessive weaknes in my arms and. Legs but mostly my legs.I sttopped going to MDA Drs because they never really offered any improvement. So over the years I've found ways to exercise that seems to help me maintain. Muscle. I can still walk but have a hard time climbing stairs and getting up from a sitting position. Also as I've gotten older, weight has become an issue. For me, maintaining a healthy diet, regular strength training, and stretching seem to help. I've had Drs tell me that I can't increase muscle. That's not true. It's true that there is no cure, but regular exercise can help.

October 18, 2012 - 8:59am
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