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Re: What Does everyone do and where are you from

Wow what a response I really enjoyed all of your winning attitudes and we should schedule a reunion or union lol of such in the future

Re: Re: What Does everyone do and where are you from

It is kind of weird that there are people so close that have M/C I have never met anyone face to face who has it and sometimes you kinda feel like you are the only one....untill this forum that is

Re: Re: What Does everyone do and where are you from

Hi! I'm a newbie. I am really enjoying reading all the posts. I am from Rogersville, Missouri and bedroom community of Springfield, MO, home of Bass Pro shops. We are just 45 min. northeast of Branson, MO as well! I have never known another soul with MC except a second cousin, and an uncle who is mildly bothered with it. It comes from my maternal grandmother's family. Apparently there are other cousins (2nd's) who have it. My grandmother is one of 11 and I have not met all the 2nd's! Anyway, I am a 43-year-old wife and mother of 3: dd 16, dd12, ds10. I am currently a preschool teacher--2-year-olds. I have worked in social work most of my life, but stayed home for the better part of 12 years, having and raising my children and homeschooling for 7 of those years! Surprisingly, I am a pretty fast typist, one of the two things my neurologist told me at the age of 12. I remember his exact words (after he told my Mother and me my diagnosis 1976), "Well, two things you'll never be: a sprinter or a fast typist!" YIKES! Well, he was right about the sprinter, although I did run alot, and I love typing, primarily because you never tell me I CAN't do something! Now that I am older, though, I am more aware of my limitations and do have to exercise more caution than I was willing to do as a young woman! You will never see me jump up from a chair and take off running! :) I took piano lessons for YEARS, however, with the MC, if I have to play in front of others I get nervous, the hands stiffen and shake and I do horribly. So . . . it's a private hobby! I so wanted to be a concert pianist, but . . . I just stick to slower paced songs because my hands only work so fast! As a teen and college student I loved running and repelling! So . . .that's just a bit about me. My teenager is bugging me to get on the computer, so I will sign up for now. One of the gentlmen suggested an MC "get-together!" I think that would be great! I will selfishly suggest KC MO as it is centrally located and my sister lives there! :)!
Jill

Re: What Does everyone do and where are you from

i have never met anyone else (that i know of) who has MC. i had a long-time friend and colleague who had a MUCH worse condition called neuromyotonia, and when i learned of my MC, i wished she were still around to share the info with. lois

Re: What Does everyone do and where are you from

Hi everyone,
Great to hear so many people's stories, and you really do get the feeling that nobody else knows about MC.
Anyhoo, as a kid competing in sports days I was always confused as to why my legs would tense up at the start of a sprint race, growing pains my GP believed. At the age of 20 I decided to get this checked out and was finally diagnosed correctly. (not before a very painful biopsy)
I'm now 30, work for EDS as a system administrator in Washington (north-east england) and I play plenty of football and squash to stay fit. MC only gets me when I take liberties with it and grap a door handle too hard for example.

Re: What Does everyone do and where are you from

Hi all... Took me a while to find this forum. I'm Erwin, 37 yrs old, from The Netherlands. Diagnosed with MC (becker's variant) at the age of 19. Been on various medications since ( Dyphantoine, Mexilitine and Tonocaine) of which the latter worked best. Unfortunately AstraZeneca stopped producing these. But pls read on onto a new topic (for those that used Tonocard).
I'm an IT Architect at EDS Netherlands (part of EDS Ltd, Plano, Texas), and I'm building myself a new house :-)


Cheers,


Erwin

Re: What Does everyone do and where are you from

Ow... Forgot to say... I also act as Guinny Pig for a neuromuscular research facility at Radboud Medical Univerity and hospital of Nijmegen, where I helped out developing surface EMG equipment, so no longer painfull needle work but a comfortable on-skin measuring device for EMG's....

Re: What Does everyone do and where are you from

Hi Erwin, and welcome! I think it's wonderful when people participate as Guinea Pigs for new diagnostic or treatment modalities - especially when it's something that is LESS invasive, and will make it less unpleasant to achieve a diagnosis! Good for you, and for the researchers who made this a goal! Thank you. lois

Re: What Does everyone do and where are you from

WOW! I just discovered this forum, I can't believe that im not the only person that has MC! I have spent my life trying to hide the effects of our condition! I live in Goffstown, NH i'M 20 yrs old and was diagnosed when I was 12. I am working on becoming an LPN. My true passion is Physical fitness! I was amazed to learn how much we all agree that it is so important to our well being. For a long time now I have been on a diet low in sugar and for some motivational force seem to have decided for my self that diet and excersize was essentialy a must for me. Little information by way of Nuerologist has been frustrating. Thanks for sharing! Jon

Re: Re: What Does everyone do and where are you from

Hey everyone,
I have popped into this forum from time to time, but I have never posted. I am from Barrington, NH and I have MC. I am 22 years old and I was diagnosed 4 years ago. I always knew that there was something different about myself from others, but every time I complained to my parents about it my mother tried to chalk it up to being another problem. I am a student at the Savannah College of Art and Design in Savannah, GA. I will be graduating after this year. I have become highly obsessed with health and fitness and I plan to go to school for personal training. When I go home to NH on breaks I work for my father as a metal fabricator.
It is awesome to read about other people's experiences with MC. I've never met anyone else with it. I think that could be pretty entertaining. I remember reading on one persons post that they race their MC siblings up stairs. Another person posted that they look for fellow slow stair walkers climbing out of the subway. Maybe I'll run into a fellow slow stair walker someday.

--Thomas Boucher

Re: What Does everyone do and where are you from

hello i'm aida and i'm 24 from miami, fl. i work as an assistant to a public works director in one of the municipalities in miami-dade county.

Type of Myotonia: earthstarr7,2

Re: What Does everyone do and where are you from

I'm 33, live in Atlanta and I am a housing developer and filmmaker. I just received my MFA from the University of New Orleans, and I am getting married in December in Savannah.

Re: Re: What Does everyone do and where are you from

We get a lot of weddings in Savannah. It's a great place for it. Congrats.

Re: What Does everyone do and where are you from

I am Julie. I live in Colorado and am currently working as a nurse aid. I am also an author. My first book "A Letter To My Child" has recently come out. (It is at www.Xlibris.com. So buy my book!)