No doubt about it.

Over the years I've found remaining calm really helps. Meditation has proved very useful in this respect.

Stress is agreat inhibitor when it comes to freedom of movement.

Type of Myotonia: Becker's

Country: England

thanks for all the feedback on my post, i suppose that makes sense to me... so stress, cold, being tired, overworking muscles, and countless other things really effect my abilities... i've been learning a lot from this site.. thank you for creating it, my myotonia is a mutation (no one else in my family has it that we know of) diagnosed at 16, and went to mda for my yearly check only 2 times.. i dont know a whole lot about it, except for what i read. reading your stories and seeing your explanations has been a breath of fresh air, its nice to be able to relate with people about this.. i've tried to explain it to others, but its difficult..

Type of Myotonia: ??

Country: usa

I'm with ya Josh. I have Thomsens along with a few other people in my family. But it wasn't until I found this site that I learned more then I ever thought I would about MC. I use to think my family was the only ones with this and the name should be changed to Moorman's disease (My last name)HAHAHA. I now know we are not alone with this, even though I have never personally met anyone outside my family with MC. It has been great to talk about what I go through with people who understand exactly what I mean. My wife is now pregnant with our first child. I am really scared that I will pass on my MC. I hope I don't, but if I do at least they will know more about it than I ever did.

Type of Myotonia: Thomsens

Country: USA

I used to think the same thing... that our family was the only one that had myotonia..... some people have it and some dont.. i was one of the unlucky ones..... at first i used to think that everyone was like that... then when i saw my daughter... how she was walking..... i knew that something was not right.... so i started taking her to doctors to see what to do about it..... i never even thought about it when i was younger.... sure i was a little self conscious but it was not like i was obsessed with it or something..... maybe cuz i thought everyone in the world was like that..... anyways... hopefully your baby doesnt get it.... my second daughter did not get it...... thank God.... hopefully it does not appear later... i dunno..... anyways....cu

Type of Myotonia: Thomsen's

Country: Lebanon

Best of luck on your child!! and congrats... this raises a uestion for me, does anyone know the probability of pasing MC to my child? my wife does not have MC, i do.. we have to kids now, but they were from her first marriage. I love our kids like my own, and raise them that way, but my wife desperatly wants to have a child with me. Only thing stopping me is passing my MC on (i know there are worse things, but MC is not the best thing)seems like the doc's told me about 25% chance of my child getting it, is this info correct?

Type of Myotonia: ??

Country: usa

I was told that it is a 50/50 chance of passing it on.

Type of Myotonia: Thomsens

Country: USA

hey eric, i see from your pictures that u play the bass?? i play piano and guitar. is it hard for u to rip a solo without "warming" up to it? i have difficulties with this

Type of Myotonia: ??

Country: usa

Sorry Josh but those pic's must be a different Eric. I have never learned to play any musical instruments (except the recorder in Jr High school HAHAHA).

Type of Myotonia: Thomsens

Country: USA

Hi again Josh -
You will probably also relate to the fact that many of us feel light-headed or scared to pieces when we have to cross busy intersections as pedestrians. The notion that we can be seen, that drivers are watching us and are impatient to get moving, and that we can't hurry any more than we are - the adrenalin released by this sense of fear and anxiety makes many of us feel as if we are going to trip and fall over. I grew up in Manhattan, and I lived with that terror on a daily basis! Also being called up to the front of the class to read or give a report, or write on the blackboard... terrifying! lois

Type of Myotonia: MC- Becker's type

Country: USA

Josh,

It depends on which type you have. You didn't mention anyone else in your family with MC, so you probably have the recessive form, or Becker's. You can find out by getting a DNA test. If that is your type, then the chances of passing it on are basically zero (your wife would have to carry a recessive gene which is very unlikely).

If anyone in your family including aunts, uncles, or cousins showed signs of MC, then you would probably have the dominant form, or Thomsen's, and in that case you would have a 50% chance of passing it on.

With Becker's it is possible for siblings to be affected but no other family members.

Jan

Type of Myotonia: Thomsen's

Country: US

Hello all,
I don't come on here nearly as often as I should. What a great post. I came on today to see if there was anything about how our minds might control or at least help control the stiffness and pain. I would like to know if anyone has heard of the proshi machine or even better if anyone has ever tried it. I found this website. http://neurodynamicactivator.com/
Jan what do you think, could it work?
Thanks,
Suzi

Type of Myotonia: ?? keep getting the run around from my Dr about the DNA test

Country: USA

Suzi,

The benefit of learning this type of biofeedback is to control stress response. You can't change your DNA mutation by mind/body therapy, but you can certainly minimize the adrenaline response.

I think that's an awfully expensive unit. I would personally recommend another product which they even mention on their website. It used to be called "Freeze Framer" but is now called emWave Coherence System. It's less than $500 and includes the desktop software and the portable unit which monitors your heart rate variability and nervous system balance.

This is not some type of quack product...it's technology that has been proven and used in medical settings for years. I was trained in the therapy when I worked in a cardiac rehab program connected to a hospital. We saw amazing results with heart patients and with other disorders like ADD, anxiety and depression.

Along with changing my diet, this is the most important thing that I have done to virtually eliminate my stiffness. I don't have anything to do with the company, but can personally vouch for the effectiveness.

emWave Coherence System

Jan

Type of Myotonia: Thomsen's

Country: US