Active discussions

life insurance

  • By hugsfromme · Posted yesterday at 9:59 pm
  • In Family and friends · 0 replies
  • Looking to get life insurance I am 58 and non smoker, I looked into ins with an agent only 1 company will insure me with knowledge of CMT. They want to come out to the house and do blood work, urine test ...

No fat in my feet!!

  • By jmaillot · New reply yesterday at 8:56 pm
  • In Assistive devices and technologies · 27 replies
  • I've had CMT all my life. I remained quite active until my early 30's, (skiing & walking mostly). I started a rapid decline in sensation in my feet when I was 35 and it was a difficult reality to adjust ...

CMT1A diaphram weakness

  • By ddjewels · New reply yesterday at 5:37 pm
  • In Exercise and therapies · 7 replies
  • I am 54 years old female with CMT1A my diaphragm is sluggish the respiratory tech told me my diaphragm is at 41% and at some point I will most likely need a hole in my throat and a ventilator!!! I am ...

my legs

  • By lordie · Posted yesterday at 9:25 am
  • In Symptoms · 0 replies
  • My legs feel like jello and speghetti after i come home from walking for groceries . and my ankles turn inward while wearing my braces and outward when not i walk on my tip toes and i wanna know how to ...

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

  • By lordie · New reply April 23, 2014
  • In Symptoms · 17 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 ...

BEWARE adverse reactions if considering chemo

  • By runnergirl1 · New reply April 22, 2014
  • In Medications · 2 replies
  • To all those affected by CMT, BEWARE of adverse reactions if considering chemo. It can be detrimental to your CMT. Clink link below to read Prevention and Management of Chemotherapy-Induced Peripheral ...

Shoes for Phatt braces

  • By kpi · New reply April 21, 2014
  • In Assistive devices and technologies · 18 replies
  • I will be fit with Phatt braces in a couple of weeks. I have historically worn plastic afo's with Reebox hightops. What type of shoes for women can be worn with the Phatt braces ...

CMT progression

  • By Danavon · New reply April 20, 2014
  • In Symptoms · 55 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 ...

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