I like reading other people's accounts of how they were diagnosed, if anything it just confirms how misunderstood MC is; thanks Leroy.

I take Mexilitine and it really helps but it doesn't erradicate my symptoms fully. I also suffer from muscle weakness, especially in the arms and the knees, but the Mexitil helps with that too.

A small amount of physiotherapy also makes a world of difference to me but I've learnt to avoid too much exercise as it builds up muscle bulk and makes me ache with no appreciative benefits.

Congratulations on the up and coming wedding Leroy!

Type of Myotonia: Becker's

Country: England

I should clarify...I don't read well when I've been up too long.

I'm sorry about your previous marriage, and congratulations on your soon to be new one :-)

Type of Myotonia: Becker

Hi Leroy - Welcome to the forum! I'm echoing Jenna - are you really a pistachio farmer? I LOVE pistachios!! Are you in California? We live in San Diego.

Do you know if your MC is the dominant (Thomsen's) or recessive (Becker's) type? If no-one else in your family has a history of it, I'm thinking it is most likely the recessive type, which is why your kids show no signs of it.

I hope your new marriage works out beautifully - congratulations. Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

I though weakness was not a MC symtom like it is with MD? I too have always felt tired but not muscle weakness, just tired like I didn't get good night sleep...ever! My wife always thinks im just lazy but i really am tired. Is tiredness/sleepiness a common symtom with MC? Also does potasium make stiffness worse? Is there anywhere I can get info on what to eat or not eat? I am not big on meds and my symptoms are not sever as I am very active and actually in the military but i so have probs after running and going up steps! I hate stairs!

Type of Myotonia: Myotonia Congenita Thomsens

Country: USA

Sonny:

There are over 80, maybe over 100 mutations that cause myotonia congenita, and a few of those mutations do cause explicit weakness. The weakness seems to be more associated with Becker MC. Most of the formally described weakness seems to be transient in nature, where the person might experience an initial weakness shortly after beginning a task but have it quickly dissipate. I get a bit of this in my hands.

I think many do struggle with various types of weakness and fatigue though, either as a primary or secondary feature of the MC.

Type of Myotonia: Becker

Sonny -
At the top of this page is a button to go to Jan's website. There is a link to info on diet for myotonia. Potassium definitely has an effect, as does caffeine, and sugar.

Please ask your wife to read the stories some of us have posted on the website, as well - it is a common thing for people to label us lazy, unmotivated, clumsy, etc. But knowing about myotonia congenita, and understanding its effects on us, a person should NOT be saying those things!

Also - when you have done strenuous exercises (running, biking, working out, even serious dancing...), your muscles can become very weak and poorly functioning, and sometimes can take a day or 2 to get back to normal. When I used to do serious gardening for hours, I'd really be into it until I stopped, and then I would be so weak I could barely move.

I've never taken meds for my MC (but wasn't diagnosed till I was 54). I hope the info you find here is useful for you! Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Yes" I am a pistachio farmer,I planted my first trees back in 1985 along with my father , i am orignialy a fourth generation cotton farmer but the pesticides used for growing cotton nearly killed me,the pistachios take 7 years on the average until first production,My MC is autosomo resseive, my parents each have a diffenant faulty chromesone ,that completed the puzzle for me to aquire the MC.

Type of Myotonia: congenita

Country: USA

Leroy:

It sounds like a CLCN1 mutation if it's recessive, and they actually did the testing. I have not heard of SCN4A mutations being recessive but I could be wrong.

You know some pestacides can cause myotonia in individuals without the disorder, from toxicity.

I've wondered for a while if we'd be more sensitive to this affect but it's not an experiment I care to embark on. :-)

I do know that my myotonia dropped off substantially after I moved away from an agricultural area but that might have just been coincidence.

Type of Myotonia: Becker

Hi Leroy -
Very interesting.
Just thought you'd be interested to know that Jan has said many times that those of us with MC tend to be very sensitive to pesticides and other chemicals. So I guess the very best thing is for you to be an organic farmer!!
I also have Becker's type, or the recessive form of MC, and know of no-one else in my family who had it. (But I wasn't diagnosed until I was 54 and most of the people in my family were already deceased.)
Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA