I have Becker's MC any my sister doesn't have it. And for the record my family doesn't interbreed! ;) haha

Hi Beth - I want you to know that I, too, like many others, dealt with this completely alone, and in my case, 100% devoid of any sympathy or even concern on the part of anyone - they all thought I was making it up, maybe to get attention, since I began to notice it very young, when my 2 sisters were babies and I was apparently considered to be jealous of them... Well, I did not ever hear of this condition, even in my nursing career, and was never diagnosed (no physician ever took me at all seriously) until age 54. Anyway, what I wanted to say is that from the time I was about 3, people thought I was either a dancer or a baby gymnast, because my muscles were enormous! My muscles are huge even if I do nothing, though I was always pretty active until fairly recently. I have Becker's, and if I decide to do exercise, my already large and strong muscles get even larger and rock hard. (very shapely, but grotesquely large, at least to me) My calves are embarrassing, and I have never been able to pull trouser legs up, except during the 60's, when bell-bottoms were as wide as parachutes. Seriously, when a doctor asks me to pull up my slacks leg so he can check out my surgical scar or whatever, I get looks from them, as if I were a freak, or an elephant. It really used to bother me a lot - but finally, now that I'm 57, I decided to heck with them. I tell them why, and they don't believe me, and I've done what I can to educate them, and just go on with my business. People are so judgmental, and half the time they don't even care what the facts are. So I rely on this forum for the understanding I would like. Even my family, what's left of them, don't really take it seriously. It's like hypoglycemia - you don't take insulin, your blood sugar is low, not high, so just shut up and eat! People can be very simple-minded about things. lois

Hi Lois
I too am the only one in my family with MC. The MDA had tested my parents, sisters and brother and no one has any bit of it at all. I did pass it along to my son slightly from what I understand. I got my blood reports back from Athena and I dont really understand what they mean but I am taking them with me to the Dr tomm to have them explain them to me. I always thought I was crazy growing up, why I would fall and why I hurt all the time. As a matter of a fact if it werent for this website I still think I would feel crazy half the time.
Thanks for being here
Jody

Hi Lois,

I am another one that has suffered with this all alone. When I was pregnant with my first child and told my doctors that I had been diagnosed with Myotonia at the age of 13 they sent me to Salt Lake City to have tests done. This was 19 years ago so don't remember what they did. But at that time they told me I actually have recessive myotonia. Which they explained to me, was I was the only one that had it and probably wouldn't pass it on to my children but possibly could jump every other gerneration. My daughter is 18 and extremely athletic. But very muscular. I pray all the time that she will never get any of these symptoms. I also have a 16 year old son he is also very athletic. He is tall and lean. We tell him he can hide behind a toothpick. lol
One of my biggest fears is for my children or grandchildren to have this. I truly would not wish this on my worst enemy.
Please keep in touch, maybe if we all keep talking to each other, it will help all of us to deal with life as if comes.

Dory Ann

Hi Beth and Lois,
I'm also the only one in my family that has the myotonia. As far as I know noone from either my father's or mother's side has it. However I do see that my father has some fairly larger muscles but he doesn't have the myotonia but then he never exercises also so the larger muscle size don't really add up.

What I want to share to you is that we have to try to look at things from a positive view. Even with the myotonia we still have a lot going for us in life if we want it to. Sure we get depressed sometimes but then this is what the friends here are for. We're here for you to cheer you up and to be the listening ear whenever you need it. Charles

Hi Charles - Thanks for the pep talk. Actually, I think that what turned out to be MC might actually have been part of what has made me a pretty up-beat and positive person, all in all. This forum is very cleansing, because I can let out some of the frustrations I had to bear alone all my life, but since I really don't "believe" in being depressed if at all possible, I have developed a pretty optimistic outlook on life, and rarely get depressed, or bored!
I've been a little down lately because of my work injury, and also we were supposed to move back to New York, and it didn't happen - and I was really looking forward to it. Lots of stress from buying a business. But I know that with many different things going on, some stress and tension is normal, so I'm just going with the flow, and it, too, shall pass.
One of the things which is so precious to me about this forum, and Jan, and all of the members, is that when I just need a bit of catharsis, this is really the only place I can do so, almost uninhibited! That is rare for me, and much treasured! Lois