New posts

my legs

  • By lordie · Posted 9:25 am
  • Discussion 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 ...

BEWARE adverse reactions if considering chemo

  • By runnergirl1 · Posted April 22, 2014
  • Discussion 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 ...

CMT1A diaphram weakness

  • By ddjewels · Posted April 22, 2014
  • Discussion in Exercise and therapies · 6 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 ...

Tripping over the walls of Old Jerusalem

  • By JeffCR · Posted April 18, 2014
  • Journal · 3 replies
  • Here is a link to a recent CMT related blog post. / ml ...

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

  • By lordie · Posted April 17, 2014
  • Discussion 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 ...

At Last

  • By jane271 · Posted April 17, 2014
  • Discussion 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
  • Discussion 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 ...

Adaptive Driving (Hand Controls) Experience

  • By Wheels3 · Posted April 16, 2014
  • Discussion 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 ...

"A wake-up call from a young e-patient: 'I need to be heard'”

  • By John2 · Posted April 15, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

Rapid progression and unusual symptoms

  • By salem4444 · Posted April 14, 2014
  • Discussion 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 ...

Does anyone have CMT and Meniere's?

  • By missymoo77 · Posted April 10, 2014
  • Discussion 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
  • Discussion 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 ...

Short AFO survey

  • By tdameron · Posted April 8, 2014
  • Discussion 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 ...

Repeated Job Loss and Career Options

  • By MDRice · Posted April 8, 2014
  • Discussion 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 ...


  • By crazywmn37 · Posted April 6, 2014
  • Journal · 1 reply
  • I have felt so positive and even had a good week where my feet dnt hurt much. Then then I was slammed with pain!! I had my double carpal tunnel surgery on the 25th & my family helped for the first few ...

CMT and Injury

  • By jane271 · Posted April 5, 2014
  • Discussion 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 ...

Patient Voices: Charcot-Marie-Tooth Disease

  • By runnergirl1 · Posted April 4, 2014
  • Discussion 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 ...


  • By toulapass · Posted April 2, 2014
  • Discussion 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 ...

What I wrote him

  • By SurroundingHope · Posted March 28, 2014
  • Journal · 0 replies
  • The day I became yours you became mine. Forever we will be together, through hell and back again, we will figure out any challenge. I gave you my heart the night we met and the more we talked the more ...

Further CMT Research for FREE!

  • By KayEnd · Posted March 26, 2014
  • Journal · 0 replies
  • HNF's Global Registry for Inherited Neuropathies collects patient's information and allows your to build a profile outlining your experience with CMT. This information is used to further research and ...

Things you can do

Support HNF

Help the Hereditary Neuropathy Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Hereditary Neuropathy Foundation

Discussion topics

Subscribe to HNF/CMT Updates

Help raise awareness about CMT

Get HNF updates by text -- Just text CMT to 91011 to subscribe

Diagnosis is Everything

Resources from HNF

Community leaders