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CMT1A diaphram weakness

ddjewels
  • By ddjewels · New reply 10:37 pm
  • Discussion in Exercise and therapies · 4 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 ...

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

lordie
  • By lordie · New reply 7:32 pm
  • 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 ...

BEWARE adverse reactions if considering chemo

runnergirl1
  • By runnergirl1 · New reply yesterday at 1:40 pm
  • 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 ...

Shoes for Phatt braces

kpi
  • By kpi · New reply April 21, 2014
  • Discussion 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 ...

No fat in my feet!!

jmaillot
  • By jmaillot · New reply April 20, 2014
  • Discussion in Assistive devices and technologies · 25 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 ...

Tripping over the walls of Old Jerusalem

JeffCR
  • By JeffCR · New reply April 20, 2014
  • Journal · 3 replies
  • Here is a link to a recent CMT related blog post. http://www.theviewfromherecr.com/2014/04 /tripping-over-walls-of-old-jerusalem.ht ml ...

CMT progression

Danavon
  • By Danavon · New reply April 20, 2014
  • Discussion 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

Wheels3
  • By Wheels3 · New reply April 17, 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 ...

At Last

jane271
  • 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

lordie
  • 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 ...

Rapid progression and unusual symptoms

salem4444
  • By salem4444 · New reply April 16, 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 ...

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

John2
  • 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 ...

Extreme Fatigue

jaylstone
  • By jaylstone · New reply April 14, 2014
  • Discussion 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 ...

Shocked

crazywmn37
  • By crazywmn37 · New reply April 12, 2014
  • Discussion 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?

missymoo77
  • By missymoo77 · New reply April 12, 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 ...

sheep stealers

LoriSames
  • By LoriSames · New reply April 12, 2014
  • Journal · 6 replies
  • This is my response to Chris Wodke's blog post: My daughter has the most rare, most severe form of inherited neuropathy, and I have watched in grave disappointment on the sidelines and I cannot remain ...

Enjoying Every Moment

SurroundingHope
  • By SurroundingHope · New reply April 9, 2014
  • Journal · 12 replies
  • Over the years I have survived. All forms of abuse from my family, cops that wouldnt help, school wouldnt help, and friends couldnt do anything. Abandonment, Abuse, Neglect, and so much more. When I turned ...

Genetics of Charcot-Marie-Tooth Human Genome Project Success

runnergirl1
  • 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 ...

Repeated Job Loss and Career Options

MDRice
  • By MDRice · New reply 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 ...

Short AFO survey

tdameron
  • 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 ...

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About this community

The Charcot-Marie-Tooth (CMT) Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Hereditary Neuropathy Foundation, an Inspire trusted partner.