Responses/Symptoms to Colleen

[Guest guest]

Hi Colleen, my name is and I'm 26. I

have a 7 month old daughter and yes, I have CMT.

Wanted to respond to all your posts/questions as

I feel I relate closely to you. I've known

about my CMT pretty much my whole life. Most of

my family has it, so it was not a shock. My

twin brother and my older brother also have it.

Last June I was in a rather severe car accident

while I was 8 months pregnant. Luckily the baby

was ok (after a few weeks of bed-rest). I

injured my back, neck and shoulder during the

accident, but because of the pregnancy I wasn't

able to do much therapy. Before the accident I

was active. I didn't feel that my CMT ever

slowed me down too much. Lots of spained ankles,

falling, and fatigue; but other than that I had a

normal active life. After the accident all that

stopped. It's been over a year now since the

accident and I am still not able to work (although

that's actually a blessing since I'd rather raise

my child - and now my husband has no choice but

to let me :-) ). My back is still injured. Most

days I can barely walk. I'm also on lots of

medication, which w/ out it I would not be mobile

at all.

I understand what it feels like to be " house bound "

all day. My husband now does most of the cleaning

and laundry. He also does a lot of child care

once he gets home from work. We live in a 3 level

home and I'm not strong enough to carry my child

up and down the stairs so he has to do her baths

and carry her to bed. He also gets her up every

morning. He's definately a hard worker. And yes,

like you I feel guilty at times. Especially on

the days when I'm especially hurting and can't

walk much or move around. But he's very kind

about forcing me to sit down and ice/heat my back

and not move.

I'm also in the process of getting treatment from

the MDA. Will be getting AFOs or Orthotics. Not

sure yet which will be recommended. Hoping for

orthotics, but fear I've waited too long and will

now need AFOs. I've noticed a lot of weakness in

the past few months - which I HATE. I used to weight

-lift and shocked many by my strength (I'm only 5

feet tall, 110lbs) so I look week, but was very

strong. Now lifting my 22lb baby is a feat in

itself. I also have good days and bad days.

Sometimes I over do it and of course wind up on my

back for 2 days. Other times I have no idea what

causes the added pain. But there are good days as

well, when I'm actually able to get me and my

daughter out of this prison of a home.

And finally, (I believe), I too have the

twitching problems. Had them my whole life.

Mostly I get them in my calfs. It's wierd, I'll

be sitting on the couch and all of a sudden my

calfs just start " jumping " . The main problem

is at night. When I'm trying to fall asleep my

whole body will jump. That's the worst as it

wakes me up and I have to start the whole

process of getting to sleep over again.

Sometimes it can take me up to 2 hours to get

to sleep at night. It's ridiculous. And

sometimes the " jumping " wakes my husband up.

Although I don't feel too bad about that as he

snores and wakes me up.

Sorry this was so long. Just wanted to let you

know that you are not alone in all of your CMT

symptoms. Everything you've explained so far

seems completely normal for CMT.

Take care, /CO