Charcot Marie Tooth

i am running the london marathon so please what ever you can give x x x http://www.justgiving.com/ali-abdullah

i was diagnosed with cmt at 9 now i'm 16. it has goten were now i have truble walking seeing and hearing. i where leg braces its been 3 years i have them.i can't go to school so my mom got me in a program where teachers come to ur home. i have been on this program for 4 years. all of my friends have abandoned me becouse i'm different. i hate that all i have is my family. and my mom who will and dose everything possabal for me.

I was diagnosed with CMT at age 13. Am now 57.
It has progressively gotten worse over the last 10
years. I have been wearing lower leg braces since
1998. It's become very frustrating to not be able to
do the simple things like using your hands for very
basic everyday things. Had to give up playing golf.

My husband of 17 years has cmt, as well his mom and grandad also, but have past on. He has went t the Dr. once about 7 years ago, got a brace for his leg and was suppose to go and get one for the other but refuses, acts like he is in denial...totally. He is getting more hateful and more bi-polor personality acting every day. He doesn't take any meds..refuses to. Any advice? I am to the point considering divorce.

Hi all,

Layne - Glad you found the website. I thought the I'm so tired part summed up so well what many of of go through every day. Thank you

Michael - Welcome to the website, it can so both a sad time and a relief when you finally get a diagnosis. All that "clumsiness" finally makes sense! I would love to talk to you more, you are welcome to join the free forum or email me.

*** SAM ***
--------------------------------------------------------------
EMAIL - cmtcentral@hotmail.co.uk
FREE FORUM - http://www.charcotmarietooth.freeforums.org

Hi Sam, I have been limping for the last year or two much to the puzzlement of my friends and collegues. I couldn't feel anything wrong myself but realised after some time that I wasn't able to stand on tip toes. Having seen my GP who referred me to Guys Hospital it took the specialist about ten seconds to diagnose probable CMT. This was only two days ago and I have been educating myself ever since. I now will have to attend various tests but everything I am reading about it - unfortunately - corresponds with my symptoms. As I type this, I feel in a kind of mental fuzz as I am slowly having to admit to myself that, yes, I probably have it. Thank you for putting together your website. At least I am not just sitting here wondering who I can talk to. I can read your blog and maybe exchange messages with you at some point.

When I came across this website, I thought 'thank you for putting in words how I feel' I like the I am so tired part and the description of the disease.
I was goofy and clumsy as a lad, but functional. In my 20's and 30's, I've slowed down and become more limited mobility-wise.
But, its not so bad. I don't really mind and it looks like I'm not alone, thanks to the internet, and these sites.

Hi Mike, I'm glad you have finally got the answers you so deserve.

If you are after more information you are more than welcome to join the free forum... it is easy to join and use and there are lots of members who are just fountains of knowledge...

www.charcotmarietooth.freeforums.org

Thank you so much for this site, My wife has been living with all if not more symptoms that you have described for many years. My 4 yr old son has had problems since he started walking, every doctor we went to all said..nothing wrong he will grow out of it. Finally we got a neurologist to see them, took him 2 minutes to tell us something was wrong, he sent them for a nerve conduction velocity/electromyogram test. Finally last Friday we had an answer CMT type1..now we can read learn and try to deal with this disorder. Keep strong emotionally and any info anyone can send us we would be so every grateful. Thanks Mike