Welcome

Welcome! You're not alone.

Getting Started:

1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group

Questions? 
Check our FAQ PAGE and First-Time-User Guide.

Privacy

Since site content and usernames are google searchable, please protect your anonymity by creating a unique username.

To change your username, click here. 

Disclaimer

All of the material provided on this site is for informational purposes only and is not a substitute for professional medical advice or treatment.

Always seek the advice of your physician or qualified health provider with any questions regarding your health.

Do not disregard professional medical advice or delay seeking it because of something you read on this site.

Our Guidelines

Let's Keep it Nice & Clean
  1. Describe (share experiences), not Prescribe (suggest treatment for others).
  2. No spam.
  3. No personal attacks or defamatory posts.
  4. No offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos).
  5. No specific doctor or hospital name mentioned in a negative context, for legal reasons. Specific doctor or hospital names in a positive context are welcome.
  6. No sharing of members' posts to other sites without their express permission.
  7. No solicitations or promotions of goods or services for sale. No fundraising without the permission of the moderators.
  8. No email addresses or phone numbers on the forum, for your security.
  9. Religious content must be restricted to the prayer group.
  10. No politics please, please.

Thanks for your cooperation.

Community Moderators

Have a question, concern, or suggestion? Or would you like to volunteer?

Please send a private message to a moderator.

CM

 

Groups

 

What is Charcot-Marie-Tooth?

Charcot-Marie-Tooth (CMT) is a rare, inherited, neurological disorder which affects the nerves, resulting in progressive loss of muscle and touch sensation affecting the feet, legs, hands and arms. CMT disease affects approximately 1 in 2,500 people.

Forum

Where to start...

Started by DoingWell53 in General. Last reply by Jon Thompson 4 hours ago. 4 Replies

Hello, I'm Keith. Thank you for adding me to the group. I'll apologize up front for the length of my story. It will be long regardless of how brief I attempt to make it.  It started for me at a young age. I really didn't know it then, but the signs…Continue

kidney issues

Started by Veronica in General yesterday. 0 Replies

Sorry have been gone for so long, the usual, been in the hospital (icu twice). Anyone have weird blood test results, electrolytes, potassium, carbon dioxide, or sodium. First my potassium went low, paralysis took over. Then carbon dioxide went off,…Continue

Hi everyone.

Started by oceandew in General. Last reply by Jon Thompson on Sunday. 7 Replies

Thank you for accepting me to this wonderful online support group. I was just diagnosed with CMT disease but I've suspected for awhile that I had it.Does anyone else feel profound weakness in their legs? That's a big problem for me. I am working…Continue

Prognosis Negative

Started by Karen in General. Last reply by Karen Jul 23. 2 Replies

I just recently visited another doctor for yet another nerve conduction study. This one was of my hands. I have lost a lot of muscle mass and I was told that an operation would only cause more neuropathy. My back is inoperable and now my hands. They…Continue

Tongue speech pronouncing words

Started by Lola in General. Last reply by CoolMommaDucky Jun 20. 7 Replies

HiAnyone having mild difficulty with speech feeling like your tongue gets in the way? I'm not referring to vocal cords just pronouncing certain words?Thanks lolaContinue

Does anyone else do this???

Started by YukiDev in General. Last reply by CoolMommaDucky Jun 20. 5 Replies

When I'm walking, I walk with my ankles caved INWARDS, with my feet pointed OUTWARDS (if you're confused, I can show you a picture or video of how I stand and walk :) ). So then, I'm scolded. So to try to fix it, I tilt my ankles OUTWARDS and my…Continue

Mobile App and E-Book Available for Download

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now.

Be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Latest Activity

Jon Thompson replied to DoingWell53's discussion Where to start...
"Thank you for such inspirational words. This is exactly why I joined this group. You hit home on a…"
4 hours ago
Wendy Krauss left a comment for John Kemp
"Welcome john"
4 hours ago
John Kemp is now a member of Charcot Marie Tooth (CMT) - Online Support Group
4 hours ago
Mandy turner liked SK's discussion Did you know that there are different anesthesia procedures for those with CMT?
8 hours ago
Mandy turner liked SK's discussion Did you know that there are different anesthesia procedures for those with CMT?
8 hours ago
Mandy turner liked SK's discussion Did you know that there are different anesthesia procedures for those with CMT?
8 hours ago

Moderator
CM left a comment for Jon Thompson
"Welcome Jon! Take  the time you need to accept things; It's a different journey for each…"
13 hours ago

Moderator
CM left a comment for Anni
"Welcome Anni! Sorry I am delayed in responding to your joining the group! I've been down in my…"
13 hours ago

Top Content 

1 Hi everyone.

Hi everyone.

Posted by oceandew on July 21, 2015

2 Prognosis Negative

Prognosis Negative

Posted by Karen on July 22, 2015

3 Where to start...

Where to start...

Posted by DoingWell53 on June 12, 2015

4 Did you know that there are different anesthesia procedures for those with CMT?

Did you know that there are different anesthesia procedures for those with CMT?

Posted by SK on April 26, 2015

5 Tongue speech pronouncing words

Tongue speech pronouncing words

Posted by Lola on April 20, 2015

 
 
 

© 2015   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service