Welcome Canaan

[Guest guest]

Welcome Canaan:

I'm 42, 3 daughters and 1 son. Was diagnosed about 8 years ago with CMT1.

My nickname all of my life was " clutz " . Always twisted my ankles, tripped on

bare floors--actually fracturing my ankle twice and that was in the last

couple of years. I knew I had drop foot for several years but that was

before diagnosis had no idea what was going on. Was relieved to know there

was a medical reason for being such a " clutz " . I now an AFO brace on one

leg and getting along great. Also have an orthotic in my other shoe. I

consider myself so far a minor case.

Don't get too discouraged with your situation, you learn to deal with things

as they happen.

[Guest guest]

Welcome to the site.

I too was always known as being clumsy and would fall a lot in high school and

college, but just chalked it up to being clumsy. My friends would always try to

come up with funny stories and antedotes about why I fall!

It doesn't sound like you have a " severe " form. Both of my feet flop when

walking anywhere now and I am unable to walk to my car without wearing my

braces. I have had a CMT diagnosis for 20 years now and it has progressed a lot,

but you get used to the changes as they happen. The good news is, yours may not

progress any more than where it is now.

Fortunately, it does not happen overnight, so your mind has time to adjust! I

know how frustrating it is waiting for a diagnosis. At first, it took 5 years

until they came up with the name of CMT and now 20 years later, they think i may

indeed have something else! Either way, it does not change the outcome. I have

found more informative information and guidance from this site than I have had

in 20 years of going to the " top-notched " doctors, so you are in the right place

at the right time.

Jackie

[Guest guest]

Hi Canaan,

I am 38 and still single. I have experienced alot of your same symptoms. Except

I have had them most of my life. I have gone through all the testings and have

alot of the symptoms but not all of them. The only way to say 100% for sure the

MD at Mayo told me was to do tests on my other family members. They don't have

any of the syptoms. I have chose not to put them through that. It took me a long

time to make up my mind to wear a leg brace. Now I wear an AFO. It is a plastic

brace that fits in your shoe and goes up to the back of your knee around your

calf. It really helps with the tripping. I wish I would have done it sooner. All

through school I would fall and would be so embarrassed. This has helped so

much. Good luck and welcome to the group. Email me anytime. It is great to hear

from people who are going through the same things I am.

Bobbie