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Ben's Friends Monthly Newsletter - September 2014 Issue

Posted by Ben Munoz on September 24, 2014 at 9:32am 0 Comments

Just the Stats:

Communities: 38

Friends: 42,500+

In this issue…


Community Moderators

Melinda Lang Melinda


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All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.


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What is Charcot-Marie-Tooth?

Charcot-Marie-Tooth (CMT) is a rare, inherited, neurological disorder which affects the nerves, resulting to loss of muscle and touch sensation. CMT affects the feet, legs, hands and arms.

Charcot-Marie-Tooth (CMT)  is a genetically and clinically heterogeneous group of inherited disorders of the peripheral nervous system characterized by progressive loss of muscle tissue and touch sensation across various parts of the body. CMT disease is one of the most common inherited neurological disorders affecting approximately 1 in 2,500 people equating to approximately 23,000 people in the United Kingdom and 125,000 people in the USA.


JUST CURIOUS plus kinda fun

Started by jnj2008 in General. Last reply by SK 12 hours ago. 24 Replies

I live in North CarolinaI was kinda wondering where everyone lives. I know this has probably been done before but I think it would be fun to update and it is something fun for me to do. Plus I will admit, we are trying to move and I just was curious…Continue


Started by Oxytosin in General. Last reply by SK yesterday. 8 Replies

I have a 6 week wait before seeing a neurologist. Interested if other people have experienced the following, particularly the pain aspects:Pain in ankles, top of foot, sole and heel (bottom of foot paper-thin), feet drag slightly, I stumble and walk…Continue

Epidural treatment for back pain

Started by Karen in General. Last reply by SK yesterday. 2 Replies

I am scheduled to have a round of three injections for discs that are impinging on my sciatic nerve. Has any one else had this? If so,did it help? Did CMT get worse? Thanks for any info you have. Karen

Medical Forms and Trackers

Started by Ben Munoz in General. Last reply by jnj2008 on Sunday. 1 Reply

Thanks to Renie, moderator of LWTN, for sharing the links of the basic forms and worksheets that can help you organize your medical information and also prepare for a doctor visit.Here's the list:…Continue

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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.

Welcome to LivingWithCMT.org!

If you or a loved one has been affected by Charcot-Marie-Tooth (CMT) also known as Hereditary Motor and Sensory Neuropathy (HMSN), this is the place for you. The purpose of our community is to provide patients, families and friends affected with CMT/HMSN a place to find support, information, and most importantly a place to connect! Please feel free to suggest new ideas, because this is YOUR community.

Allow this community to become a part of your life. . .

1. Share your story on "My Page" and personalize it to reflect who you are!
2. Upload pictures and videos easily.
3. Start a new discussion on "Forum" or contribute to existing discussions.
4. Welcome our new members with a comment on their page!

*Please keep in mind this site is not intended to diagnose, prescribe, or replace the service of your physician, but solely to give you information to help enable you to make informed decisions about your healthcare with guidance of healthcare professionals.

This community is brought to you by http://bensfriends.org/

Latest Activity

braylin's gramma left a comment for Mrs.TMo
"Hi Mrs. TMo......we're glad you are here! Lots of great people here. We hope you make a lot of…"
10 hours ago
Mrs.TMo left a comment for SK
"Thanks, SK!"
11 hours ago

SK replied to jnj2008's discussion JUST CURIOUS plus kinda fun
"I'm okay with the capes, as long as we're not getting our feet wrapped up in them, but…"
12 hours ago

SK liked jnj2008's discussion JUST CURIOUS plus kinda fun
12 hours ago

SK left a comment for Mrs.TMo
"Welcome Mrs TMo, I'm glad you found us! This is a great place for info and support, so please…"
13 hours ago
Mrs.TMo is now a member of Charcot Marie Tooth (CMT) - Online Support Group
13 hours ago
jnj2008 replied to jnj2008's discussion JUST CURIOUS plus kinda fun
"I like the Superfriends type party. That would be a blast!! Can you see all of us together in one…"
16 hours ago

CM replied to jnj2008's discussion JUST CURIOUS plus kinda fun
"You and I would get in a bit of mischief I can tell! Yes, we are missing you Gaynelle! Hope all is…"

Top Content 

1 JUST CURIOUS plus kinda fun

JUST CURIOUS plus kinda fun

Posted by jnj2008 on September 26, 2014

2 It's time to let you know...

It's time to let you know...

Posted by SK on September 24, 2014

3 Tell us Five Interesting Things about You

Tell us Five Interesting Things about You

Posted by dancermom on September 10, 2014

4 Does anyone manage to get a full 8 hours of sleep at a time?

Does anyone manage to get a full 8 hours of sleep at a time?

Posted by SK on September 25, 2014

5 Fatigue.


Posted by Martha Carrier on August 26, 2014


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