Hi Ashton's Mom -
I am a 60 year old who spent my first 54 years being told I was making my symptoms up, attention-seeking, lazy or unmotivated, clumsy and "fat" (by age 4, my gluts and leg muscles were already quite huge, and have always been - although now I AM fat!)...

Anyway, it really does my heart good to hear the young moms being attentive, diligent, and advocating for their kids, and not taking doctors' dismissive BS as gospel!! Thank you! My family never did that, and I bore the brunt.

However, having said that, being brought up with a fairly strict work ethic and high expectations, I did develop all sorts of coping mechanisms (as most of us do) which became second nature to me, and I have lived a normal, active (and non-medicated) life. I am an RN (now disabled, but unrelated to MC - was a work injury), married, 2 grown kids, lots of pets, and have always been very physically active and strong. I think MC makes us a bit stubborn about succeeding at things, but also forces us to have really good senses of humor about ourselves, since we can fall or look like Frankenstein at any moment, and need to learn to cope with embarrassment, or just let it go.

I believe, had I known about MC as a kid, I would have been quite open about it - that way, I could try as hard as I wanted to, and not have to feel stupid if I fell or stumbled. But since I didn't know, I always was quite self-conscious in school, especially gym, and it kept me from trying some sports I think I might have really liked - like skiing. I did roller and ice skate, play softball, cycle, bowl, dance (a lot!), ride horses and such.

Well... good luck to you and Ashton. The EMG's aren't fun, but at least they give a pretty good basic diagnosis. Then you can consider the DNA test, for confirmation. Lois

Type of Myotonia: MC- Becker's type

Country: USA

Lois
Thank you so much for your encouraging words...I Love my children with all my heart and when I notice something isn't quite right...This mom wants to know why!!! Although it tears me up that I may have to watch him suffer at times...I know deep down Ashton will be OK with this...He is a very strong little boy...Hes already active in wrestling and absolutely adores it (I hope he will be-able to continue with it) he is a ball player and loves all other sports...hes always determined to do his best and not much gets him down. Hearing these kind and positive words give me hope for my little guy =) So thank you very very much

Jenna,
a huge thanks to you as well! Encouraging words are always Awesome and you even got a little chuckle out of me so THANK YOU

Type of Myotonia: Myotonia Congenita (Beckers)

Country: USA

I have Becker's variant MC and my symptoms are quite bad occurring thoughout my body and not just in my hands. I take Mexitil and that has helped tremendously but I still have the MC.

However, don't give up hope. Despite my condition I'm in full employment, I've travelled around Europe, go to rock concerts, visit archaeological sites, socialise, got married, had kids - in fact I live a pretty full life

MC is a condition that can be controlled with therapy, medication and learning coping strategies. With you along to help I'm sure that Ashton will get along in life as well as any other kid, just be positive about it from the start and please don't become too protective; experience is the best teacher.

Wishing you the all best!

Type of Myotonia: Becker's

Country: England

Thanks Pete
Ashton is a determined tough little guy =) thanks for the encouraging words. Sure means a lot to a Mommy knowing there are people out there living full wonderful lives!

I think I first started getting some mild isolated attacks of myotonia in my hands when I was about 6 which I really didn't think much of. I did have some weird sensations in my legs at the time but not actual myotonia.

It wasn't really until I was about 9 or 10 that it really hit me in the legs.

But as Lois said, most of us learn to live with it.

Skating on the side walk.
Ice skating.
Skateboarding.
Gymnastics.
Softball
BMX biking.
Getting to the phone in time...these were the things I could not do.

Skating on a smooth surface with things to grab onto to stop.
Karate.
Tree climbing.
Regular bike riding.
Not letting go of the phone when my sister tried to take it from me...these were the things I could do.
I also managed skiing a few times before I nearly killed myself getting off of a chair lift.

Type of Myotonia: Becker

Country: USA