PDA

View Full Version : We have a diagnosis, does anyone have this too?

cari
03-01-2011, 12:46 PM
We finally have a diagnosis after two and a half years. I am just wondering if there is anyone else out there that has the same diagnosis. I am feeling pretty lost and alone. She has CMT 2C which is Charcot Marie Tooth Disorder. I guess this strand of the disorder has only come out in the past year and is usually not diagnosed until later on in life. If there is anyone with this diagnosis I could really use some info and support!
Thanks so much!
Cari
LKN
03-01-2011, 01:52 PM
I have a good friend with CMT. PM me and I will give you her contact info.
Christamae
03-01-2011, 02:13 PM
CMT is a type of Muscular Dystrophy. mda.org is the website for all the kinds of Muscular Dystrophy. I have an unusually severe kind of Ullrich's Congenital Muscular Dystrophy. The Muscular Dystrophy Association can be a great resource and offers support services like a camp, Christmas events, as well as medical support like assistance paying for wheelchairs and braces and free appointments every 6 months with a MDA neurologist and team of specialists.

Feel free to ask me any questions.

:hug:
suzanne2545
03-01-2011, 02:22 PM
My mom's twin brother has CMT. None of us has been tested and it was considered when we were first figuring Parker out.

MDA is a great resource, as others have said. I know my aunt and uncle would be happy to chat with you. I can't say off the top of my head if their kids were tested to see if they were carriers.
JacobKaden
03-01-2011, 04:24 PM
I am sorry to hear this Cari. Hopefully now that you have a diagnosis, you can get the support and resources that you need. :hug:
LKN
03-02-2011, 01:33 PM
I talked to my friend. She has CMT 2 also but doesn't know the sub-type. She was diagnosed at 3 and is now in her late 30s. She said that she or her mom would be happy to talk to you.
destinyandmiracles
03-02-2011, 03:48 PM
I am sorry to hear this......many hugs to you. Was this found by Dr.T?
Esties mom
03-02-2011, 08:24 PM
they think estie may have that too but she does not fit all of it, originally they thought she had sma but ruled that out, i would like to know much more about it because not much was given to us.