Reya:

I wouldn't mind knowing what you do for your shoulder blades.

Ab out your hips, the myotonia used to slightly dislodge my right hip so it would feel like it was sitting wrong in the joint, particularly during the winter when I would get cold. I have developed another hip condition which can be caused by engaging in sports like cycling and rowing or sitting at certain angles for too long, but people can also have a genetic predisposition to it by having congenitally mis-shapen hip sockets. I don't know if mine were mis-shapen to begin with but I wonder if yours might be. I'm not sure if myotonia alone would cause hips to dislodge. After you have your baby you might want to consider getting an MRI to determine this and also to make sure you don't have any cartlidge damage, which might be a source of some of your pain.

Type of Myotonia: Becker

Country: USA

Have either of you been checked for Ehlers-Danlos Syndrome? That's what was causing my joints to dislocate. There are several types...I have the hypermobility syndrome. It's not all that uncommon in the general population. If you or people in your family are "double-jointed" then it's very likely it is causing some of the subluxation and dislocation issues.

Ehlers-Danlos is usually diagnosed by rheumatologists. It has a dominant inheritance pattern and runs all through my father's family (the MC is from my mother's side). It is strongly associated with fibromyalgia.

Jan

Type of Myotonia: Thomsen's

Country: USA

Nope! I really suspect that it's just the MC--the cramping puts SUCH tension on my joints, and when you throw pregnancy on top of it, all bets are off. I can have it looked into later, though.

Type of Myotonia: Thomsen's

Country: USA

Looked it up. DEFINITELY not me!!! I have VERY little flexibility. And my skin really isn't elastic.

Type of Myotonia: Thomsen's

Jan:

I have not been checked for Ehlers-Danlos Syndrome but I would be surprised if I had it. It's interesting though, of the people with myotonia causing disorders I've communicated with, which is just a handful of people, three have other relatively unusual disorders as well.

I'm not sure if it is statistically significant, but I wonder if people with CLCN1 or SCN4A mutations might have more disease causing mutations in general due to descending from a gene pool that experienced something similar to that which has occurred in Finland, where they have the found effect and a large number of genetic disorders due to a small founding gene pool, isolation, rapid population expansion, and a population bottleneck.

Type of Myotonia: Becker

Country: USA

Mine aren't misshapen, I don't think. I'm pretty sure it's just the @#$@#@ relaxin releasing early + the spasms. My shoulders subluxate when I spasm, too. :P Even without relaxin. I'll talk to the orthopedist about it after I have the baby, though.

I'll put something up this week, video-wise! I do shoulderblades + shoulders together when I exercise.

Type of Myotonia: Thomsen's

Country: USA