New Member Introduction/ story

[Guest guest]

Hello Everyone,

My name is Christy. I am 31, live in NC and having been being checked for the

possibility of having CMT since I was 8 years old. The only reason they check me

is because they had already diag'd my mother (at age 27) with CMT. Seven years

after having me. She is now 52 and she has to wear braces and her hands and legs

are waisting away. She is also having breathing problems and one side of her

vocal cords are paralized.

My mother and I have never had a real close/open relationship (we get along ok)

so it's had for me to ask her how she felt when her CMT first started bothering

her. I remember her falling alot. I also fall alot. I remember when my mother

had the muscle and nerve bi-op done. It was really bad. She came home and the

dog jumped up and ripped the stiches out by accident.

I remember her feet being really cold all the time. I also remember her burning

her hands easy because she was unable to tell that the water/stove etc.. was to

hot.

Well, with all that said, I had my first child in 2001. Now four years later I

have noticed that I have been falling around alot more than usual. I have also

started have numbness in my toes. I also have a few numb spots up my legs. My

arches have gotten really high. This is from a person that was flat footed all

her life. (My feet hurt me alot) My hands get cold more easy and my wrists seem

weaker. I am getting alot of pins and needle and creepy crawly feeling in my

hands, feet and legs. I catch myself looking down at my arm or leg to see if I

have a hair or and ant on my skin.

I also have pain in some of my joints on my fingers and toes. I am also having a

little trouble hearing and sleeping. I saw my MD doctor in 12/05 and he said I

was some what worse. He told me he could fit me for braces if I think I needed

them. I don't want to go that route just yet. I felt like I had just ran into a

brick wall after my last visit because this was the first visit with my MD

doctor were he actually said I HAD CMT.

It has been 21 years of we will check you every year to see if you show signs.

Now I have a four year old little boy and I have been told he has a 50/50

chance. He has very flat feet. He has already had to be fitted for inserts to

wear in his shoes because his bones were turning in his ankles and he also has

alot of really bad leg pain. I don't know what it worse. Just being told Yes you

have CMT or you might not but we will keep a check on you each year.

I just need some encouragement. I really feel alone in this battle. The only

other person I even know with CMT is my mother. Before my mothers diag's I had

never even heard of this diease. Wow!

Thanks for the ears.

Christy