Hello everyone I would love to hear where you are all from and what you do for a living!! I am John I live in Nova Scotia Canada and I am a Elevator Tech and I also own a Sports Nutrition Business. I am 31 and enjoy all types of exercise (The horrible feeling that you get after exercise subsides in time). Jan I hope this post is ok I would just love to hear from others

Cheers
John

John, while I try to keep the forum on topic because we get many health care professionals checking out information, I do feel it's helpful to know what other people do for a living and where they live.

I have heard from many with MC in other countries who are basically told they can't have a career, and I think it would be very encouraging to them to see the variety of occupations we have among us. There is still so much ignorance about our condition and because we may walk funny there can be a stigma that we can't be productive in our society.

So I'll start by saying I live in the mountains in Colorado. I have worked most of my life as a bookkeeper but am also a personal trainer, nutritional consultant and exercise rehab therapist. I've never traveled outside the US/Canada but because of this forum have made friends from all over the world.

Jan

Hi John - I'm 56, and only learned about MC (and that I had it!) less than 2 years ago, and quite by accident, while being tested for carpal tunnel syndrome. I lived with MC all my life, but was always told I was "fine", and just lazy, or fat, or imagining things. I have been an RN for 24 years, specializing in acute physical rehabilitation, and more recently, in case management and transplants. In my "former life", I was a nutritional counselor and metabolic therapist, and once upon a time, a draftsman! I live in San Diego, but we are hoping to move back to New York sometime this year. Welcome to this wonderful forum, where we can feel free to not feel stupid!!! lois

John, I am 51 (the end of this month), female, and I live in Ohio--which is bitter cold right now! I am a high school teacher. I have Beckers and have known about it since I was three, though I was diagnosed then as having Thompsens! I have 4 sons. (In case anyone was wondering,since we were just talking about preganancy, I did not seem to have any particularly difficult pregnancies or deliveries--all were quite quick, in fact!) I have always been a good spectator, since I did not feel comfortable doing sports! But I do hike and used to ride a bike... Welcome to the forum!

John, I thank you so much for asking this question and I hope that everyone in this group will take the time to answer this question. Why???

Well I have been feeling rather down because I wonder if my son will ever be able to have a meaningful job and career. I often think that he will be discriminated against because they will see that he doesn't walk perfect or pick up on other things that his myotonia affects.

So, to all of you in advance, I thank you for sharing your career and your experiences. In all honesty, all we really have is each other. Doctor's in research don't ask those living with Myotonia...they proclaim to know it all without asking those who have it to help them.

I'm lucky, my son's doctor cares to hear what you all have to say. All he cares about is helping our child.

I don't usually get "preachy", because I don't like it myself, but I just saw "Hawking", and everyone should watch this film. I know Dr. Hawking is a VERY unique case, but the man has ALS, is completely paralyzed, yet has solved some of the most puzzling problems of the universe, and essentially completed the work of Albert Einstein. While we are all not as brilliant or compelled as he is, each of us has the capacity to contribute in our own way. I think Rosa is a great example of a person who has fought extremely hard to be as productive as she has been able, for as long as she has been able. Each young person who wonders if they will be able to lead a productive life needs to be encouraged and helped to find good, realistic career counseling that takes their limitations into consideration . . . who knows - one of our own may solve the energy crisis, global warming, or be the next Picasso!! Remember, Beethoven was deaf, Roosevelt had polio, Leonardo da Vinci had epilepsy - and there are hundreds more!

Hi

I'm 46 years old and am from England. Still live in the North of the country.

I left school at 16 and went into Research & development for the Steel INdustry. I did day release and graduated in Metallurgy (BSc hons) in 1986. I did get blew up in an accident at work (40% burns) aand nearly died but it was an explosion and no matter how ell I was 'warmed up' nobody can outrun an explosion. A few years ago I went on to the works as an Environmental Manager and recently moved back to RD&T as a company expert. I played table tennis at Count level and a about 6 years ago I even beat the Welsh No2. I played my first game of 5 a side soccer in 25 years a few weeks ago and it really hurt (but thats cos I wasnt in good condition). Play badminton every week or two against an ex footballer whos 10 years youner than me and can 'hold my own' against him.
My philosophy is to try and continue as normal a life as possible (although there are some obvious limitations). it used to be embarrassing taking girls upstairs at the pictures as they then found out about my little problem....no .... MC not my other little problem (Ha.. Ha..). having a sense of humour also helps.

Got married at 26 to a great girl and have two girls aged 15 and 11 who show no syptoms of MC.

I am close to completing my 30th years with my employer and looking to retiring in another 10 -13 on a full pension.

I think the main areas of embarressment are when you are young. Older people tend to think there but for the grace of god....

Anyway thats me in a nutshell

Best wishes

Kev

Hi great question. My name is Tina Im 35 with 2 children a 15y/o Daughter, and a 1 y/o son. I live in Portland OR. with my Family..I have been married 13yrs. I don't work outside the home right now..I am a stay at home mom. In the past I did office work. But my true passion is working with pets/animals, which has proved to be difficult with the MC.

Tina

Hi Tina - I've always loved animals, and volunteered at a humane society, and assisted teaching dog obedience when I was younger. I wanted to train one of my Dobermans as a Therapy Dog when he was a pup (he's almost 5 now)- He's so smart and sweet - he would have been perfect. One night, at an obedience class, he accidentally tripped me, and (clumsy me!), I couldn't recover my balance, and fell on my reconstructed knee - and that ended obedience work, Therapy certification, and even conformation showing, because my leg lost what little strength and stability it had left. And I had never heard of MC, and thought it was just my innate clumsiness that made me fall. lois

Hi, my name is amanda, I'm 30 from Portland, OR - and I had the dna test done a week or so ago and will soon hopefully have a definite Dx very soon...I'm a pc tech for our transit agency. Just started on mexitil last month, and I have had an 80% improvement. My myotonia was pretty severe - it affected me most of the time. I go back to the Dr first of March to probably bump the dosage a little. I am currently on 200mg 2x a day. I have had very few side effects, though a bit of anxiety/insomnia (psychosomatic?) and a couple of instances of palpitations that were longer than I've ever noticed before. Lots of external stress lately, though.

I've had symptoms since an early age, and had some interesting hurdles to finally get to this point. I was a very active tomboy as a kid, I spent most of my childhood swimming and on my bicycle. I am lucky, in a way, to not have had a diagnosis as a kid, my family would surely have coddled me much more. Instead, I worked twice as hard to keep up. I'm really looking forward to this summer, because I will finally be able to have the freedom to ride my motorcycle everywhere I want to...

Thanks !!

Hey! I'm Cynthia, and I'm 23. I live in Miramichi, New Brunswick, Canada, though I grew up in Saint John. I just moved from Halifax, NS. I was told I had Thompsens when I was 15. I am an animator/character designer. I've done an illustration for Rachael Ray, and animated on some commercials(Toyota), tv shows(like Odd Job Jack), music videos(like 'Mr.mom' for Lonestar), and web stuff for Fox and Mattel and designed cartoons which haven't(as far as I know) been sold to any networks yet. Maybe someday!
It gets pretty cold up here in the Miramichi in the winter, which makes me quite stiff from time to time. I loved playing badminton when I was in high school and I was pretty good at it so I'm going to start playing again.
Some weird things about me that I like to blame on the myotonia are that I can't really burp...or I can't remember the last time I did...Does anybody else have a weirdo problem like that? And I have some heart fluttery stuff that sort of feels like my heart is skipping a beat every so often.
For me I don't really feel different than anyone else except that I have a hard time getting going. I used to feel embarrassed that people would notice and think I looked weird or that I was lazy and needed exercise so I started taking mexitil. I stopped after a while because I figured it didn't matter what people thought and I didn't feel like taking pills everyday if I didn't have to.
I love eating bananas no matter what they may do to my muscles!

Hi...well I'm new here and I'm 15 years old. I found out i had MC when i was 5. I live in California and I just started High School. No one at my high school knows I have MC but they still don't make fun of me, which I like.
I have a younger brother(10) who also has MC. Although his is not as severe as mine the doctors said it is still comforting to me to know that I'm not the only one and have someone to relate to what I feel or am going through.
Knowing that i have MC hasn't really hindered me in any real apperent way. I am a cheerleader, volleyball player, soccer player, and football player. And although it may be sore feeling for a while I just biter my lip and wait a little bit and it will all be fine.
Chubba

I was diagnosed with MC at 18 months and am now 55. I'm currently a teacher in California where I grew up.

Hi,
I live in Virginia and I'm 57 years old. I was just diagnosed with MC about two years ago. I've raised two wonderful children and have many grandchildren from a combined family. I've worked as an Office Manager/Executive Assistant most of my life. I've never danced professionally, but when I was young, I was the lead dancer for the "Steam Heat" song in the play, "Pajama Game," that ran in our local school. If there's music playing, and it's not out of place, I'm dancing! I also love hiking. Living in the mountains has been a wonderful opportunity to hike, and there are lots of up and down hills right around my home that keep me in shape. Nothing slowed me down physically in the past, but I used to have days where I couldn't do much after a lot of physical activity. Now that I understand MC, I find myself pacing my activities a little better each day so that I don't exhaust myself in one day and have to spend too much time recuperating. In otherwords, I have given myself permission to relax at times! I work on puzzles, do needlepoint, work on Sudoku, read, sleep, etc....whatever it takes to stay put in a chair for awhile. Blessings to all of you, and take it from me....the world does not stop if we get some rest!

I am 43 and been diagnosed since I was 9. I am a Project Manager and Industrial Engineer.

Oh forgot to mention. I am from a suburb near Kansas City, Missouri.

I am 43 and live in New Jersey. I am the director of chemical dependency treatment department for a local hospital. I was diagnosed at age 3 and had a challenging childhood related to my MC. I learned the usual tricks to hide the symptoms but I was raised in a very sports oriented family and I loved to play most sports. I was pretty good but the MC always hindered my ability. To further complicate things my younger brother, who does not have MC, was an all state baseball player. I am married and have two children without MC. I sometimes wonder if the "secretive" ways I tried to hide my MC had any negative effects in some way. I have adjusted very well to medication I began using as an adult and I am not sure how my childhood would have been different had I been using meds. Anyway, as a rule of thumb, I find little usefullness in looking back at questions like that. This forum has been very useful, growing up I did not think I would ever communicate with anyone else with our unique condition.

Hi my name's Lorna, I was diagnosed at the age of about 10,I am 41 now I have two older brothers one has MC the other missed out! I trained as a nursery nurse (NNEB) and now own 5 nurseries with another in the pipe line and two after school clubs and holiday play schemes. I used to hide my problem but find now that it's best just to ask people to help. The people I work with are fantastic if I'm having a bad day and are very understanding. I haven't been seen by a doctor about MC for at least 10 years and have never taken medication - reading what others have said I may go to Doc as I could do with a break and if meds help I'll give it a go! P.S. I live just outside London on Heathrows doorstep

Hello everyone. I live in Miramichi,New Brunswick. I was diagnosed with MC when I was 25. I am now 50. I an a sales clerk in a convenience store. MC...does effect me in my daily work place, but I have learned how to compensate. Nobody even notices.

Hey!! I just moved to the Miramichi! Very cool! I could have seen you! You work in Chatham, Newcastle...? I work over in Newcastle and I live in Chatham! :D
-Cindy

Hello everyone, My name is Toni and I have had MC basically as long as I can remember. I am currently a travel agent, BUT did a year as a professional cheerleader. I believe they saw some signs in me as I was cut my second year out. I currently coach little league cheerleading and do find it VERY hard sometimes. My life is affected everyday but my MC and I am looking for others who share in this disorder.

Hi everyone! My name is Rolma and I am in research (breast cancer-not MC). I live in NJ currently but was born and raised in Philly. I was born with MC and was diagnosed at around 5 or so.

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Replying to:

Hello everyone, My name is Toni and I have had MC basically as long as I can remember. I am currently a travel agent, BUT did a year as a professional cheerleader. I believe they saw some signs in me as I was cut my second year out. I currently coach little league cheerleading and do find it VERY hard sometimes. My life is affected everyday but my MC and I am looking for others who share in this disorder.

I am so sorry - I forgot to tell you I live in New Jersey, USA.

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

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

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

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

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.

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

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....

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

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

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

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

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.

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

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!)