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Re: HI JENNA!- the reply

Paige:

I live in California. We have a few thousand Earthquakes a year here, but most of them are too small to feel or are in isolated areas like the middle of the desert. But we've had a few over the past year in the middle of the city. They were small but started suddenly and still gave the building a good jolt. Our buildings are design to withstand most Earthquakes. We had a very large Earthquake here in 1994 called the Northridge Earthquake which caused a few buildings and structures to collapse but most sustained minimal or no damage, even though it was a very violent Earthquake. The house I lived in at the time, which was a wood frame and stucco house, like most here in California, had no damage, which was very surprising considering how hard it shook. But still it was very scary! If you ever come to California and go to Universal Studios, they have a ride called Earthquake which is a very good simulation of how a big Earthquake feels.

Pretty much anything that scares you enough to cause your body to release adrenaline can make the myotonia worse. Your brain sends signals to other parts of your body through nerves, including the command to contract your muscles. So these nerves are hooked up to your muscles like wires, only there is actually a little gap between the nerve and the muscles. To turn the muscle "on" and make it contract, that gap has to be bridged. This is actually no different than turning on a light. When you flip the switch on, you are bridging a gap between the wires in the circuit. To bridge the gap between the nerve and your muscle, a substance called a neurotransmitter is secreted to fill the gap and allow the signal to travel from the nerves, into your muscle, and make it contract. This neurotransmitter is called acetylcholine (ah-see-til-coh-leen). Adrenaline causes your body to release a lot of acetycholine. So the muscles contract a lot easier, and faster, and stronger. This is supposed to help people get away from, or defend themselves against danger, but since people with Myotonia Congenita have a problem relaxing their muscles, it just makes them lock up more because it's making the muscle much more sensitive to the signal telling it to contract.

I hope that makes sense!

Type of Myotonia: Becker

Country: USA

hi!

hi. my names Paige and i am 11 yrs old. like your son, i was passed around like a parcel until i was finally diagnosed with Becker MC. i just wanted to let you know that you don't need to be pressured into having your son take any drugs. (that is what it is, isn't it?!) anyway, i don't take anything apart form calpol and manage perfectly fine. if you don't know anything about it because i know because its such a rare disease alot of doctors don't really know a great deal, here are a few pointers.
1. try and keep him warm, especially in winter.
2. make sure all his teachers know whats wrong, so he doesn't feel embarrassed if he goes stiff.
3. people say that potassium makes MC worse, but in my experience it doesn't, so he can eat bananas!
4. don't be alarmed if his face goes stiff or his tongue. all our muscles go stiff so this includes EVERYTHING!
OK, think im done. there are alot more things, but these are what i think, the main. thanks for listening.
see ya, luv Paige void(0);

Type of Myotonia: becker

Country: UK

Re: 5 yr old Son

I would say a big fat NO to that kind of drug at that age.

It's a disease manageable without medications of that kind of strength. It's neither progressive nor life-threatening. I would look into physical management of symptoms and mental management--a LOT can be done through the right kind of warm up, even within a single movement, and in training oneself to use the minimum effort to achieve the goal at hand--that prevents a LOT of freeze-ups.

Type of Myotonia: Thomsen's

Country: USA