Hey everyone, so as I said last night, I still haven't had an official diagnosis, but here's some updates on what's been happening in my Life with "CMT" (the quotes because who knows if it's actually CMT).
~I made an account with hnf-cure/Inspire under the username NoodleStevie
-I am following the groups for CMT, Bipolar Disorder, Depression, Oppositional Defiant Disorder, and PTSD for myself, and Muscular Dystrophy due to a friend being wheel-bound from MD.
-My picture is more current than my one on this site (so yes, my hair is purple now)
-Add me if you want to chat, be friends on Facebook, ANYTHING! I'm a totally open person!
~I've mentioned this on some other discussions, but I've lost almost all feeling in my toes.
-I can only feel cold and possibly heat (haven't tested heat, but I'll test it in the shower tomorrow since I already took one today)
-When I touch them, it feels numb and if I dig my nails into them, it feels like I have "pins and needles."
-This is only occurring in my toes, nowhere else in my body
~My walking has gotten worse ever since I started school and my first job.
-I still walk with my ankles inwards and my toes outwards, but now my toes drag along the floor because I can't feel them enough to tell where to place them.
-My feet feel like bricks, to be honest. They're really heavy. I think that might be another reason I can't lift my legs very high.
-I feel pain in my calf's from standing too long, walking long distances. Also, my thighs hurt when I stand up an sit down.
~My hands have been alright, other than getting cold constantly, but I think that's probably from the weather changing to Fall (I live in New Hampshire so it gets very hot in the Summer/Spring and very cold in the Winter/Fall).
~I've met a new friend and support buddy online, and she's probably someone you know of or know yourself!
-Her name is Bernadette Scarduzio, she is known as The Face of CMT.
-She is part of a documentary about her and her family, called 'Bernadette.'
- From what I understand, her entire family is diagnosed with CMT, but she has it worse
-I met her over Facebook after sending her a message asking for any ideas about my convincing my mom to get me tested. She was the one who suggested I get more involved with hnf-cure and Inspire.
-She also suggested that even though it's hard, I should stretch and exercise regularly so my parents don't blame my problems of weakness and pain on my lack of exercise.
Anyways, Thanks for dealing with my ranting and blah blah blah,
Best of luck, and lots of love, to all,