welcome lenka

[Guest guest]

hi lenka,

i wanted to send this before i was going to be kicked off the net, i have

been on for a while today and my mom wants me to get offline.

anyways i wanted to welcome u to the group. when i read ur post i had to

hand it to u, u have said what i have been trying to say. i am 17 almost 18

(next month) and i also have a mild case of CMT. i have CMTX. i have had

like u high arches all my life. i did though walk when i was suppose to, i

don't remember then and my parents rn't available right now for that answer.

i can walk fine, no other noticeable changes at all.

i was diagnosed when i was 13, i was in physio for my ankle. i am a klutz

and i kept hurting my left ankle. i was misdiagnosed all the time. finally

after another set of x-rays, my doc at the sports medicine clinic sent me to

get an EMG and NCV. it was then my dad spilled the beans about CMT to the

doc and tech. i was tested and diagnosed the same day. about a month or so

later i saw a neuro who just happens to know my family (mom's side) she also

on the spot diagnosed me with CMT but then ordered a DNA test. it confirmed

my diagnosis of CMTX.

after that everything sort of went down hill. i have burned out or have come

close so many times. i am trying to pace myself but i am not really good at

it at all. when u said this i can completely agree with u.... " I'm afraid of

burning myself out too soon. So I try pacing myself. Toughest thing is

that I appear " normal " so people have a hard time believing that there's any

real reason for ... " i don't act like there is anything wrong at all, i do

at times walk on my tippy toes. i figit all the time because i am

uncomfortable. i use my walker at school all the time. i slip a lot and i

can usually catch myself before i fall onto the ground yet again that day. i

use the elevator so i don't need the stairs. i tell people i am fine expect

for my docs, physio, OT, guidence counsellor, psychologist, my boyfriend and

a few close friends that i can trust. everyone else, i lie to them. they

don't want to hear about it so i don't go into it at all. i don't normally

cry because of the pain when people r around but it has happened a few times

in class. i gather what ever courage i have left and walk out of the room

and go on with my day. it would be so easy to just go home but i am not

allowed anymore, if i am in pain i have to stay at school and suffer. i used

to fake being sick all the time because of my pain. my parents knew this and

then they put there foot down about it all. now i am not taking pain meds,

if i try them again i want to be able to get sometype of relief and not have

the doc chicken out at the doseage and not raise it when it needs to be

raised. i want so much from life but i can't get that much at all, i am

trying to cope with my CMT, pain, fatigue, depression and having no memory.

its a lot to deal with and i am just trying to do my best but it doesn't

seem good enough no matter how much i tried to prove that something really

was wrong and that i wasn't faking.

i wish that everything works out for u and again, welcome to the group

alisha

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