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i was. miss dx and now i show signs of cmt

  • By lordie · New reply 2:14 pm
  • In Symptoms · 2 replies
  • I was mis dx by a doc who was charged w malpractice . now i see the symptoms of cmt in my self is it just me or was he right or pick the wrong dx The neurologist didn't perform any test except emg nothing ...

CMT progression

  • By Danavon · New reply 8:36 am
  • In Symptoms · 52 replies
  • I know my CMT symptoms are progressing. It is very frustrating. I thought I would see how other people handle it. Today for me it was trying to get a necklace on. Could not do it. I am still able to drive ...

Adaptive Driving (Hand Controls) Experience

  • By Wheels3 · New reply April 17, 2014
  • In Assistive devices and technologies · 3 replies
  • I have just gone through a very elongated experience as I sought an altertnative to using the gas and brake pedals in my car. What has been your experience, if any, with gaining use of hand controls in ...

At Last

  • By jane271 · Posted April 17, 2014
  • In Medications · 0 replies
  • I had an appointment with a new neurologist for the first time yesterday and after researching medications that are suitable for patients with CMT, he is going to write to my GP and ask them to prescribe ...

thrombosis and afo

  • By lordie · Posted April 17, 2014
  • In Assistive devices and technologies · 0 replies
  • I wear afo full length and i have a vien thrombosis in my r leg i find my brace is tight but i wanna know if the brace will make it worse ...

Rapid progression and unusual symptoms

  • By salem4444 · New reply April 16, 2014
  • In Newly diagnosed · 6 replies
  • Hi, I am 49 and for more than 20 years now, i've had some numbness in my feet and hands, but not constant. I was able to walk hours without problem, but sometimes not and toes became numb for a few hours ...

Extreme Fatigue

  • By jaylstone · New reply April 14, 2014
  • In Symptoms · 34 replies
  • I had been diagnosed with CMT some 10 years now. Diagnosed after trying to find out why I was having so many issues with constant muscle cramps. One issue I have been having for some time now is spells ...


  • By crazywmn37 · New reply April 12, 2014
  • In Newly diagnosed · 20 replies
  • I was just diagnosed 5 days ago. I have a few family members that have had it but they do not speak of it & we are not close. So, I did what everyone does...googled it. I cried for 2 days & got drunk ...

Does anyone have CMT and Meniere's?

  • By missymoo77 · New reply April 12, 2014
  • In Newly diagnosed · 1 reply
  • Just wondering if anyone out there has CMT 1a and Meniere's disease and if so have they got any tips or meds that have helped, especially withy the dizziness and clumsiness ...

Genetics of Charcot-Marie-Tooth Human Genome Project Success

  • By runnergirl1 · Posted April 8, 2014
  • In How CMT changed my life · 0 replies
  • Abstract: Charcot-Marie-Tooth (CMT) neuropathies comprise a group of monogenic disorders affecting the peripheral nervous system. CMT is characterized by a clinically and genetically heterogeneous group ...

Repeated Job Loss and Career Options

  • By MDRice · New reply April 8, 2014
  • In How CMT changed my life · 3 replies
  • First just a little background. I live in rural Nebraska. IE the corn belt. I am not however a farmer nor is my immediate family. My father instilled in me a strong work ethic from early on. We didn't ...

Short AFO survey

  • By tdameron · Posted April 8, 2014
  • In Assistive devices and technologies · 0 replies
  • Here's a short survey on AFO usage and how it affects your shoes. The results are supposed to go directly to the manufacturers. It takes 5 minutes or less. This is a good way for a group to approach the ...

CMT and Injury

  • By jane271 · New reply April 6, 2014
  • In Exercise and therapies · 3 replies
  • A few years ago I injured my foot after I had been doing far more activity than I usually would. I sometimes find it hard to accept my limitations and I do push myself too hard at times. As a result I ...


  • By toulapass · New reply April 6, 2014
  • In Medications · 7 replies
  • HI Just wondering what medications are available that work . I have lots of nerve pain in my legs. I have tried a few and nothing seems to work i heard that they give topamax does anyone take it and what ...

Patient Voices: Charcot-Marie-Tooth Disease

  • By runnergirl1 · Posted April 4, 2014
  • In Symptoms · 0 replies
  • Charcot-Marie-Tooth disease is an inherited disorder affecting nerves in the hands, arms, feet and legs. Symptoms generally begin in childhood and progress slowly; patients eventually have difficulties ...



Just some info

  • By Fuzzyman · New reply March 22, 2014
  • In Symptoms · 21 replies
  • I have the Parker source book on CMT. It has some differences with what it says can be affected with what my neurologist is telling me. He says the disease will only affect my feet and hands. But the ...

Carbon fibre orthotics for kids with CMT?

  • By Sas_E · New reply March 18, 2014
  • In Assistive devices and technologies · 2 replies
  • Hi. Does anyone have any experience with carbon fibre (CF) orthotics (Phat or otherwise) for children? I've found lots of info about the benefits of carbon fibre for adults, but would love to hear from ...

Participate in CMT Research!

  • By KayEnd · New reply March 12, 2014
  • In HNF news · 2 replies
  • Sign up with the Global Registry for inherited neuropathies to participate in therapy development and medical research for inherited neuropathies. Take 30 minutes of your time to make a difference for ...

Possibly the Most Radical Innovation to Zippers in Over a Century

  • By runnergirl1 · New reply March 8, 2014
  • In Assistive devices and technologies · 1 reply
  • After more than 100 years, the zipper has finally gotten a makeover, thanks to inventor Scott Peters, his mom, and his physically challenged uncle. Peters’ uncle, Dave Peters, has myotonic dystrophy ...

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