Jan - I saw in one of your previous posts that you live in the mountains - glad to hear you're so close. Maybe one day we can meet up for lunch in Denver?!

The cold definitely gets to me sometimes too. Stairs and inclines are the absolute worst for me and strangely getting "nervous" really effects my tongue and mouth. I've had several embarrassing public speaking moments.

I have a two year old son, and I'm going to have to pay careful attention to him as he's growing up. I know this community will be helpful if I need to guide him towards things as he's growing.

Reading some of the stories here last night really sent me through a tumble of emotions. On the one hand, it's such a relief to find a way to share experiences. On the other, my heart is breaking for the people, children especially, who have gone from doctor to doctor and have been told that there's nothing wrong with them. Looking back on my youth, I just wish I had "known" what was happening, even if I couldn't do anything about it.

There has to be a way to raise doctors' awareness, pediatric doctors especially, about MC conditions so that they can know what they're seeing if a patient comes into their office describing symptoms. Might be my new mission in life....

-Ryan

Type of Myotonia: Thomsen's

Country: Colorado, USA

Ryan,

I think I'll be up in Denver in August for an appointment. I'll email you when I know for sure so we can get together. Maybe we can get a few more people together - there are several with MC but I don't think most of them have found the forum.

I can sure relate to the problems talking...there were many times when I wouldn't even answer the phone if I was having a very stiff day.

We need lots of help educating doctors, school staff and other healthcare providers! I was also motivate by my awful experiences as a child as well as almost losing my mother from an anesthesia reaction.

Jan

Type of Myotonia: Thomsen's

Country: USA

Welcome aboard the Rigamortis rowboat i was first diagnost 38 years ago wit MMD then 10 years later with Thomsens...my symptoms are sometimes not bad but most the time severe.. chokeing..falling..slurred speech.. double vision ..stiff face..can't let go ..ect ect ect..in the middle of pesticide season out here on the farm..skinned up right now from falling off my bicycle while i was trying to get off in front of a crowd GOT LOTS OF CHEERS. When i sneeze or choke i am paralyzed for about 5-8 seconds. when i am lying on the couch i completly strech out about 10 times an hour...#1 if your young and do any heavy work like bailing hay or such besides the safety issue to you and anyone else TAKE CARE OF YOUR BACK. or you will be miserable when you get older listen to Jan the moderator she has helped me quite alot

Type of Myotonia: Thompsens

Country: U.S.A.

Im 20 years old and i have thompsons. Wanted to know what kind of tricks u use or things u do and dont do that trigers it?

Thx

Type of Myotonia: Thompson

Country: Canada

My biggest trigger is adreneline/anxiety...job interview...blind date...competition of most kinds...doing things that your performance might hinder causing undesirable results in front of people...driving in heavy traffic for long periods...or just going to the doctor or dentist...there are lots of triggers but that's my biggest

Type of Myotonia: Thompsens

Country: U.S.A.

I'm going to start a new thread asking for people to submit a list of triggers. Would welcome anyone's additions.

Type of Myotonia: Thomsen's

Country: Colorado, USA