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CMT-Support · CMT- Friends and Support

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Description

Charcot-Marie-Tooth Disease (CMT) is the most common Hereditary Neuromuscular Disease known. It is also known as "Hereditary Motor-Sensory Neuropathy" (HMSN). About one in 2500 people or 2,551,875 people have one of many different forms of CMT world wide.

In this group, we share our feelings as well as life's ups and downs. The latest research, mutual support of people with CMT, their friends, families and medical professionals.

We share good days and the bad as well. If you are dealing with CMT in your life in some way, then it is our hope that you will join our group of caring-sharing people.

Our founder stated: "I may have started this group, but it is a group of and for the members."

Sadly Lamar Stephenson RNC, our founder- passed away 01-10-04. His hopes - dreams were to educate those with CMT and the public about it, to support research in finding a cure and/or better treatments for us all. To also help insure that future generations will not have to suffer with this disease, as we have. We strive to continue his dreams, here at CMT-Support.

Prior to losing Lamar, we also lost two dear friends of the CMT Community, our moderator, Kathleen 'Kat' Lopp Smith in Sept of 2003 and Roslyn 'Roz' Levenstein who at the age of 81, was author of our motto, Get Up-Get Dressed-Get Out. On 3/19/08 we lost Our Dear friend and Moderator, Alice Hilton. 4 VERY special people gone, but not forgotten.

This site WILL continue on- in Memory of, Lamar, Kathleen, Roz, and Alice.

Group Owner:Becky M. Group Moderators:Tina T. - Kay S. - Erin K. - Sharon C. - Jenn R-S LOGO by: Susan Kinney

Disclaimer

This site does not engage in offering medical advice or professional opinions. The information provided here is designed to help support, not replace, the relationship that exists between a patient and their physician or healthcare provider

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Re: doctor
I am one of those who is not in a position to fire a doctor. At least not many of them. Where I live, there are not that many. And the doctors that there
Posted - Sat Mar 20, 2010 8:51 pm
sal2491
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Re: doctor
Geri mentioned dark blue spots on the top of her foot. Nothing at all about anything like that on her thighs or calves. Blood clots were not what they were
Posted - Sat Mar 20, 2010 8:42 pm
sal2491
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FW: [CMT-Support] doctor
Hi Geri, Just so you realize I do not post often, I guess because I have my own belief system about pain. I am giving you an example of what I went through
Posted - Sat Mar 20, 2010 8:10 pm
Candice Ralston
irishblessin...
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Re: doctor
I have almost the exact same issues that I am dealing with. Can some one please help me to understand whether physical theapy will accelerate the muscle
Posted - Sat Mar 20, 2010 7:18 pm
Ted Faver
carp_apprent...
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Re: doctor
Hi Geri! I am not normally an alarmist,and I am not disagreeing with Sal, but I need say that I am very concerned about your mentioning the blue spots in
Posted - Sat Mar 20, 2010 7:16 pm
phantomsec4
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