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Frustration

Dee-Bratt
  • By Dee-Bratt · Posted October 4, 2013
  • Journal · 11 replies
  • Daily frustration tries to get the best of me now since 1991 when I was first told I had Charcot-Marie-Tooth Disease. Everything I once was able to do, I can no longer do with out my AFO braces on both ...

CMT and RHEUMATOID ARTHRITIS ( R.A )

Raybow
  • By Raybow · Posted October 3, 2013
  • Discussion in Medications · 11 replies
  • does any one else also have rheumatoid arthritis and CMT . I was just told that I also have rheumatoid arthritis on top of already having CMT ,they said the RA is causing the deformity's in the joints ...

What type Of CMT I have?

Ahmadein
  • By Ahmadein · Posted October 3, 2013
  • Discussion in How CMT changed my life · 5 replies
  • Can any one tel me how can i know which type of CMT i Have ? I Have Charcot-Marie-Tooth (CMT) since I was 10 years old and now I'm 32. I lived with CMT almost 22 years, and I didn't know that it called ...

having to stand with CMT for several hours and after-effects - what kind of

trestles
  • By trestles · Posted October 2, 2013
  • Discussion in How CMT changed my life · 25 replies
  • I have CMT - I think it's probably middle of the road to severe but not life threatening. My question is this: After a certain amount of being on my feet or walking, I develop severe pain in my legs ...

lived with CMT almost 22 years

Ahmadein
  • By Ahmadein · Posted October 2, 2013
  • Journal · 2 replies
  • Hi I Have Charcot-Marie-Tooth (CMT) since I was 10 years old and now I'm 32. I lived with CMT almost 22 years, and I didn't know that it called CMT except just only from 2 days ago. LOL . I knew what ...

Has anyone had problems with CMT affecting the bladder?

Natureinspired
  • By Natureinspired · Posted September 27, 2013
  • Discussion in Symptoms · 3 replies
  • My granddaughter, 10 years old now, was diagnosed with CMT at 15 months, just a baby. My question is: Is there help for her concerning bladder control? It seems to be getting worse. She's in 5th grade ...

bobstiles

bobstiles
  • By bobstiles · Posted September 20, 2013
  • Discussion in Assistive devices and technologies · 9 replies
  • I have been wearing Phatbraces for about 6 months. I am very satisfied with them and they did not cost nearly as much as some others. I wore molded plastic for about 20+ years and these are as good as ...

What is the best advice someone has given you regarding your journey with

runnergirl1
  • By runnergirl1 · Posted September 19, 2013
  • Discussion in How CMT changed my life · 4 replies
  • What is the best advice someone has given you regarding your journey with CMT ...

Looking for a Neurologist in Central New Jersey

heffefr
  • By heffefr · Posted September 17, 2013
  • Discussion in Newly diagnosed · 0 replies
  • Does anyone know of a good neurologist in the Central New Jersey area that has experience with CMT. Fortunately my symptoms are not that bad but I have seen them starting to increase. I was diagnosed ...

Foot sores caused by helios

Reilly3
  • By Reilly3 · Posted September 16, 2013
  • Discussion in Exercise and therapies · 8 replies
  • My daughter met with Mitch in April and was fitted for helios. They have been great but each day she needs to place band-aids on areas of her feet prior to wearing the braces and the sores that have developed ...

Extremely severe lower leg pain

Myslajek
  • By Myslajek · Posted September 12, 2013
  • Discussion in Symptoms · 7 replies
  • Hi all! I was wondering if anyone with CMT gets extremely severe lower leg pain, not pins and needles or burning, but intense reeling pain between the ankle and knee on the outter side of the leg. I get ...

find others and share awareness

camccune

BobStiles

bobstiles
  • By bobstiles · Posted September 7, 2013
  • Discussion in Assistive devices and technologies · 2 replies
  • If anyone has a list of M.D.A. offices and contacts for the United States, I would appreciate it if you would post it. Many people write in and have no idea there is such a wonderful charity for many ...

ALWAYS KNOW WHEN TO STOP AND REST

Raybow
  • By Raybow · Posted September 6, 2013
  • Discussion in How CMT changed my life · 2 replies
  • PLEASE WATCH THIS VIDEO IT IS WHAT DOCTORS AND PHYSICAL THERAPIST DONT ALWAYS TELL YOU ABOUT GOING TO FAR WITH CMT http://www.youtube.com/watch?v=41XB-XWZ1 D8 SORRY BUT WE MUST LOOK OUT FOR OURSELFS AND ...

Founder of HNF, Allison Moore is going to be published!

runnergirl1
  • By runnergirl1 · Posted September 6, 2013
  • Discussion in HNF news · 0 replies
  • A blog within a blog. HNF’s CSO (Chief Scientific Officer), Sean Ekins wrote a blog about his work with Allison Moore and her two “fighter Mom” friends Lori Sames and Jill Wood. He named his blog: “Rare ...

Text CMT to 91011 to get updates about CMT!

runnergirl1
  • By runnergirl1 · Posted September 4, 2013
  • Discussion in HNF news · 0 replies
  • Did you know Hereditary Neuropathy Foundation sends out informative text messages on updates about Charcot-Marie-Tooth Just text CMT to 91011 to subscribe today ...

Bernadette Movie screening September 17th

runnergirl1
  • By runnergirl1 · Posted September 3, 2013
  • Discussion in How CMT changed my life · 0 replies
  • Bernadette Scarduzio was born with the most common inherited disease that no one has ever heard of: Charcot Marie Tooth (CMT) syndrome. CMT is the number one hereditary neuropathy in the world, affecting ...

Tremors,propanolol, DBS

groaner
  • By groaner · Posted September 2, 2013
  • Journal · 0 replies
  • Im a 65 year old male with CMT 1A since childhood. In last couple of years my tremors have intensified so I went to a neurologist who diagnosed Roussey-Levy Syndrome. Started 40 mg Propanolol for month ...

Accessibility Knowledge Is A Must

Wheels3
  • By Wheels3 · Posted August 28, 2013
  • Discussion in How CMT changed my life · 2 replies
  • I'm 63 and diagnosed with late onset CMT in 2008. I've learned mostly by trial and error that accepting invites to events with family and friends needs careful advanced info about accessibility etc. My ...

Stomach problems

pinto01040
  • By pinto01040 · Posted August 28, 2013
  • Discussion in How CMT changed my life · 21 replies
  • It seems with CMT people I know also have stomach problems!! I have been told many things about what could be wrong with me! Like IBS, pre ulcers, etc. Personally I think it has to do with the cmt! I ...

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