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

  • By lordie · Posted 9:29 am
  • Discussion in Symptoms · 0 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 9:22 am
  • 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 9:20 am
  • 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 yesterday at 4:42 pm
  • 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 ...

What he wrote to me

  • By SurroundingHope · Posted March 22, 2014
  • Journal · 10 replies
  • Babe I love you and always will. I love the way you look at me with those beautiful eyes; the way they radiant just blows me away. You make me want to do the best in everything. The way I feel when I ...



CMT progression

  • By Danavon · Posted March 20, 2014
  • Discussion in Symptoms · 46 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 ...

Our second annual report with Stanford Medical School

  • By Brian · Posted March 19, 2014
  • Journal · 0 replies
  • We just finished a brand new special report, “Experts by experience 2014: A compilation of patients’ stories”, in partnership with the Stanford University School of Medicine. It is a 31-page collection ...

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