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Re: what MC is like for kids- Beckerjavascript: void(0);

MY HighSchool athletic nightmare took place at the age of 15,when My Mother thought it would be good for Me too join the swim team,at the first swim meet I thought I could warm up behind the bleachers,It didnt work" I dove straight off the pool block and seemed too have coasted half-away across the swimming pool,I remmeber thinking back woundering why no one attempted to save Me,well about 6 months later I finaly recieved My Diagnosed with MC,Be happy if your Diagnoses is at a much younger age and famialy are more understanding.






Type of Myotonia: MC

Country: USA

Re: what MC is like for kids- NIGHTMARES!

Hi Leroy!
OMG! that has happened to me loads of times! i can remember when i went swimming in year 3 and we were doing a swimming gala. when it was my turn, i had to swim in front of everyone!! i was so nervous, and ive read somewhere that nervousness
can cause MC to worsen.
Anyway i jumped into the water and set of swimming. I started of OK, but i could feel myself getting stiffer and stiffer, until eventually, i had to get out of the pool. it was so embarrassing!
My motto is, if you laugh, there is no way you can cry!
from Paige

Type of Myotonia: becker

Country: UK

Re: what MC is like for kids- NIGHTMARES!

Paige,

I'm sure we all have some many stories of things that happened when we were younger. I must admit kids are not very forgiving and it did seem harder to 'manage' my MC when I was younger. All I can say is that now (I'm 52 now) its a little easier in that adults are generally more accepting although I never go into detail when I explain what it is, I normally describe it as being a bit like MS, just seems easier than going into all the detail. I must admit I am suprised that no one has put on here about any serious accidents they have had as a result of their MC. I know I have had a few close shaves, usually crossing roads etc.

Kev

Country: England

Re: what MC is like for kids- NIGHTMARES!

Kev:

I've only had one or two. The first, falling, was partially the cat's fault. The second, rupturing a tendon/muscle/ligament, was my fault....I had a bout of hyperexcitability on the last rep of the last set doing 180lbs on the interior hip abductor machine, and something in the back of my upper thigh ruptured. It took over a year before I could walk on it without feeling any pain, and I should have had treatment for it but I had crappy insurance which wasn't good for much but antibiotics and basic blood work.

Other than those two incidents, I'm generally less accident prone than most people because I am very aware of my physio-dynamic abilities and limitations. I can also usually tell whether my muscles will lock up or not before I move. I'm also probably mildly dyspraxic so I've always put more planning into how I move, and as long as I don't rush it I can do some fairly precision tasks.

Type of Myotonia: Becker

Country: USA

England company!!!

hi Kev!
its Paige here. ive just read your thing. soz i dint reply before but i dint see it! yh, ive wounded up in hospital a few times, coz ive fallen. in fact i fell down the stairs at school the other day! thow luckily my friends were there to help me. just wondering, where abouts do you live in england? coz im the only one in here i think that is not livin in the UK!
did you know that the chance of getting MC here is out of 10,000, but in America its only summit like out of 5,000?!!
plz let me know,
paige void(0);

Type of Myotonia: becker

Country: UK

Re: England company!!!

Paige:

Here is a page that will give you better numbers.
You will have to edit the link because it can't be posted as a direct link from this page.

http:
//www.ncbi.nlm.nih.gov/
books/NBK1355/

Joe

Type of Myotonia: SCN4a (PAM)

Country: US

Re: England company!!!

Hi Paige:

I've seen estimates of the worldwide prevalence of myotonia congenita to be 1 in 50,000 to 1 in 100,000. But it's believed to be as common as 1 in 10,000 in some parts of Scandinavia.

I think the odds of being diagnosed in the UK are greater because in the UK you have universal healthcare. Anyone can go see a doctor and the government pays for it, but here, that is not the case. Here, to see a doctor, and have tests, most people need either private insurance, which can be expensive, or very limited, or they have to pay for everything out of pocket, which can be very expensive. My brother had to have surgery to have his appendix out when he was young and it cost $27,000....that's about 47250 pounds.

For very old, poor, or disabled people there are a few government health care programs that might theoretically pay for some or all of a person's health care...in my state this program is called Medi-Cal. But a lot of doctors and hospitals don't accept Medi-Cal because the government doesn't pay them enough with it.

I think American doctors might also be less aware of disorders like myotonia congenita.

Type of Myotonia: Becker

Country: USA

Re: what MC is like for kids- Beckerjavascript: void(0);

A lot of things like that can be overcome to some extent by mental muscular planning.

I was "trained" to use starting blocks in track when everyone had to practice sprints together. I have to say that no matter what, it's WAY slower for me to start in blocks than standing because the "prep" position makes my muscles want to freeze up. In general, my standing sprints, with me working with all my effort, were about as fast as those of the 250lb shotputters! But I didn't fall. I knew what my muscles needed, I avoided the adrenaline rush that makes everything stop responding, and did something that was more or less like running out of the blocks!

I was also the kid who could never catch the ball fast enough or throw it the right way. As an adult, though, I got into ballroom dancing, and the planning that went into that transferred to other activities, so now I'm still moderately bad at sports requiring hand-eye coordination, but I am not SPECTACULARLY bad like I was.

I really can't say that I was ever teased for it, though. It confused people more than anything. I could do more sit ups and pull ups than any girl in my grade, but I was useless at ball games and sprints. I lived back int he age when kids picked teams in PE, too, and honestly, I was never, ever picked last even though I "should" have been for several sports--part of that was probably because when I was the "picker," everyone knew that I made an effort to pick a mixture of good and bad players and not leave the less able kids to the end, so I think other kids reciprocated.

Type of Myotonia: Thomsen's

Country: USA