Ah, but here's a glitch - I have always been highly intolerant to heat, most particularly humid heat. It makes me feel quite weak, faint and ill. I also perspire ridiculously freely when it is hot and humid, and this is even when I am not even moving. I LOVED the cold weather in my youth - I almost never wore a coat unless it was snowing or below 30 degrees. I felt so invigorated by the cold - and since I was always stiff, but ALWAYS moving and very active, I really felt no difference between horseback riding and ice skating, roller skating or shoveling snow. I always worked my muscles really hard, because I felt like I needed to.

Now that we have lived in San Diego for 21 years, I have become a wimp, and no longer tolerate the cold well - and now, to me, "cold" is below 60 degrees! HA, how the mighty have fallen!! But I also find, as I get older, that I move more slowly, mostly because of several injuries I've sustained, and I am not in a rush most of the time, so I have fewer really bad cramping or spasming episodes. I can no longer walk as I always did, and so rarely have to worry about crossing streets (this was a real source of fear and self-consciousness for me, growing up in New York City, and walking miles per day).

I would be willing to participate in a survey for you. I don't have any reservations about sharing my information with people - I find that my openness about my problems and foibles often opens the way for others to share about themselves, and I really don't see any problems with that. I know some people are very private about "personal" information - I don't find this to be "personal" in any regard other than that it is about me. To me, sharing personal stuff has more to do with feelings, perceptions, etc.

Anyway, didn't mean to go off on a tangent!I know researchers have to be very careful and objective about their research - I think the people I was referring to more specifically are physicians, who are quite cavalier and abrupt about informing you that this condition is minor, has no associated pain, is not dangerous, etc. These statements are inaccurate, and most doctors appear completely closed to learning an actual patient's perspectives and experiences, because it rocks the boat, and doesn't jive with decades-old literature. It's much easier to dismiss the patient as an aberration, a whiner or a crackpot. I'd love to have a compilation of patient stories, experiences, symptoms, and present them to the American Academy of Neurology or some such group, just to say "We may be a small group, but we want to be correctly identified and respectfully evaluated and understood!".

OK - off my soap box for now! Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Louis:

And therein lies the conundrum! We have a very grey disorder in a black and white world. In some respects we can be very able bodied and active and in some respects we can be very limited and I think that's part of what makes it very difficult to explain to people. I go down the list of things I know I can and can't do, or at least can't do well, and even I have to admit, it sounds contradictory sometimes but it's only contradictory in the sense that the world is flat.

I've always had a problem with the cold making the myotonia worse, and I prefer it to be a bit warmer in the house than not, but these past few years I've developed bad heat intolerance as well, and like you, I get incredibly weak if I get overheated. I grew up without air conditioning at home or in our cars and, though I did hate the heat and did get over heated, I generally did just fine. I even managed a trip in 2001 from the coast to the Sierras in 95 degree weather. The air conditioner in the van I was in broke down in Bakersfield and I was the only one who didn't care. But in 2003 I took a trip to Hoover Dam and I was the only one in the group who was in desperate search of shade. I've had to spend the last few summers laying directly in front of the air conditioner feeling like the life has literally been drained out of me, and I feel very strongly the disorder plays a part in this.

I never thought I'd say this, but I NEED air conditioning!

BUT....I also need heat :-)

Anyway, no need to apologize for going off on a tangent. Trust me, I have days!

Now that I have finally been typed, I would be more than happy to compile a story for you. I've been meaning to do it for a while but haven't had the time, unfortunately.

Jenna

Type of Myotonia: Becker

That description used to be from wikipedia, but it looks like they erased it because it did not meet "their" standards. It did not have citations and the like. Part of that article was written by someone else and the part about the social effects was written by me. Jan also read it and made some suggestions that I added and changed to what I originally had written.

I guess we need to find the correct citations that backup the fact that we face significant social issues with this disease. Also a complete medical explanation may be needed that is backed up by significant research. This would be a good opportunity to find out what researchers in the field are saying about MC and what they are leaving out. We should contact them directly.

Type of Myotonia: Thomsen's

Country: US

Jim,

I had also noticed that they had removed that whole section from Wikipedia. I didn't go through all the comments to see who did it or why, but I'm glad it's somewhere we can refer to.

Jan

Type of Myotonia: Thomsen's MC

Country: US