Re: Comfortably numb

[Guest guest]

Hi ...(I'm also !)..

You might have read some of my posts, and I'm so much like you it's not funny.

I was diagnosed, now it's been almost 3 years ago, but had all the symtoms for

years...just none of the doctors knew and I had never heard of CMT.

It started with pain and the first doctor said I had bone spurs in my heels (and

all my life I've had a high instep and hammer toes) so he gave me a shot of

cortozone which seem to have made it worse, so much to the point I went to an

orthopedic surgeon and he said the other Dr. had deadened the top of my arch.

I'll skip the long parts and get to what you were talking about. Finally, I

met my doctor now and she knew from the get go I had CMT and did the nerve

conduction test and I am the same as you to a point, dead...but when it started

the numbness was half way down my leg, and now it's dead right below the knee

but at the same time I do have lots of pain, but the pain medication takes care

of that to a point. It's so hard to explain. I wake up with charley-horses in

the middle of the night and recently have been getting really bad groin spasms,

but I can't rub them out like my legs. I stretch alot which helps, and my

doctor said I'm her worse

case. I purposely asked her that question because I have noone to compare it

to. It's not so much that I'm scared, it's that I don't know " What the Hell is

Going ON! " " (lol) It's great to talk to someone else who understands.

If you'd like to e-mail me it's spoolie4@... Take care and this

board is a godsend.

in the Keys

[Guest guest]

,

I have episodes of numbness but it doesn't last long. Almost as if my legs have

fallen asleep.

[Guest guest]

Hi ,

You're lucky. Acutually, everyone has their own thing I guess. Last night at

work I noticed I was bleeding on my ankle and didn't know it. It's embarrassing

and scary. I hit myself on something??!! Same thing on my hand this week, a

cut and I didn't know it. It's just like the story with the woman who could

feel the pea under all those mattresses, I swear someone with CMT must have

written that fairy tale! Have a great day,

in the Keys

[Guest guest]

,

I too am numb and have no feelings no knee jerk reactions, sometimes it feels

like I am walking on wooden blocks,sometimes I think I lift my leg to take a

step and down I go, I look like the old comic on Saturday Night Live I just tilt

like a tower, Yet in the morning I can feel my feet, how about you?

Just when I first wake up. Maybe ghost feelings who knows but it is

great just for a while. I also must wear socks and shoes because we cut

ourselves and never feel the pain till someone sees the blood. This is now in my

hands up till my palms so I must look at what I do. My husband is great about

getting things from my purse.

I am sure we all have horror stories but we are still young and strong at heart.

And we laugh with each other - isn't this great that we have this group? Thanks

guys for so much over the years.Will let you know about my hand controls and my

visit to Mayo in three weeks, maybe something new.....around the corner

Joyce

[Guest guest]

me too, now my hands are going asleep

[Guest guest]

I still don't know where you guys are initially talking, I always pick up the

last part of the conversations?? Where am I going wrong? and yes, my hands

and legs hurt and are numb!!(lol) xoxo

in the Keys