Welcome Chad

[Guest guest]

Hi Chad, Nice to meet you. I am sorry for what you are going through. I

never thought I would go through some of this stuff either. Maybe you would be

able to walk easier with a good ankle wrap or a pair of AFOs.

You may want to ask your doctor about this. Or just go to a sports store and

take a look at the ankle supports. It could work for a while at least. Then

you can graduate to AFOs.

[Guest guest]

Hi, Chad......... Read your intro and wanted to introduce myself as another

person with CMT1B.

I did not get diagnosed until last year (and I am 70 years old) but all my life

I was clumsy - couldn't run very well, gym class was torture (climbing a rope

impossible and the rings - forget it).

My father at about age 60 began having trouble with balance and walking and was

diagnosed with Pernicious Anemia for which he took B12 shots the rest of his

life (he lived to 82). His walking and balance became increasingly worse but he

could walk, with a walker's help, till the end.

When I was about 60 I began with strange sensations down my left side of my

back, arm and both legs - pain and tingling in feet all the time - balance

problems (fell many times - at work, shopping, home - my feet just tripped me).

Went to Dr. Not much satisfaction there.

Went on like that until about 2 years ago - went to Neurologist. He did MRI,

nerve conduction, all that stuff, and even a blood sample to Athena to check

inherited neurological problems, but came back inconclusive (as did yours). In

the meantime, I was checking all my symptoms on the internet. Hammertoes, high

arches, toes that do not flex, feeling of feet being bound in tight socks all

the time. So I had heard of CMT.

Then last year my daughter, age 47, began with the numb feet, tingling, rigid

toes, etc. and because she saw what was going on with me and what had with her

grandfather, she insisted that her Neurologist run tests on her. Well, her DNA

test came back that she had CMT1B - and her neurologist (and mine also) agreed

that is what I must have also and probably what my father had (and his father

before him used 2 canes until his demise (80s).

So far not too much impact on my life until now - just hard to get around. Have

a cane, a " rollerator " , and wear New Balance 811 sneakers ALL THE TIME (only

kind keeps me steady on my feet). I work full time yet as a bookkeeper, and I

still drive. I do experience pain but not nearly as much as other people on

. I am one of the lucky ones.

My daughter is doing her best to hold off the other symptoms - she still runs

for exercise. I could never run, and now I would fall flat on my face. I am so

glad she found out what we have.

Anyway, wanted you to have some info from someone else with CMT1B. I also have

a son, age 37, and he was not tested. Doesn't want to know as he has no

symptoms (yet). And my grandchildren seem OK also. However, if you asked me

when I was in my 30s or 40s if something was wrong I would just have said I was

naturally a " klutz " . (PA Dutch for clumsy). Now I know better.

Take care.

June from Pennsylvania