My daughter has had continued difficulty breathing as in 30 percent of capacity and Mayo Clinic believes that her Myotonia is the culprit. She has Thomsen's as I do but it the stiffness is so severe that it is interfering with her breathing. Mexilitene is no longer effective so they are moving her to Carbamazapine. They did note issues with oxygen transfer so there may be more involved but Myotonia is a factor.

Does anyone else have rib muscle stiffness or severe issues with breathing related to non-dystrophic Myotonia? I must confess that I also had an episode when helping my son move. I found myself unable to move my lungs adequately to intake air and thought I was literally going to die right there. They did a heart cath and my heart is just fine and it was not asthma. For me, it happened only after heavy use of the muscles. For my daughter, as soon as she moves her muscles get very weak.

Stuart

Type of Myotonia: Thomsen's

Country: USA

It sometimes feels like a belt around my lower ribs that is just snug enough to be felt which will not allow a deep breath. If there is some physical effort which demands more oxygen then there is extra stress or even panic which means adrenaline and more stress.

Since I began limiting my potassium intake the tightness of the lower intercostal muscles still happens but only just enough to let me know that it is happening.

Type of Myotonia: SCN4a

Country: NC, US

I only get a difficulty with breathing when I suffer a myotonic attack on the muscles over my ribs. This is most likely to happen if I cough. Otherwise I don't have a problem.

Type of Myotonia: Becker's

Country: England

Stuart:

I'm not a doctor but I'm just skeptical that such severe, constant breathing difficulties would be caused by Thomsen MC, or even the more supposedly severe, Becker MC.

I think that the one time I fell and had an episode of complete rigid paralysis, my rib muscles might have locked up to where I couldn't inhale, but I was able to breath again after I hit the floor and my muscles relaxed.

The one breathing problem I do seem to have on occasion, which I previously mentioned, my sister seems to have as well...in fact she has been complaining about it since childhood, but she's never exhibited any signs of MC, not even when pregnant.

I only know of two situations where severe breathing difficulty has been documented with MC. Certain medications administered for intubation can cause a masseter spasm and muscle rigidity in those with MC, which can lead to secondary breathing difficulties. And the other exception I know of is, there were some myotonic kittens a while back who's owner claimed died of breathing difficulties.

The kittens are an unusual case though. They were severely affected...more so than the goats, and this was probably compounded by the energy and impulsiveness of the kittens. While the kittens obviously had a myotonic condition, the cause my have been different than the cause of MC in humans. I'm not sure if they had the warm up effect and I think they probably tended to lock up multiple times a minute because it seemed to happen every time they went to move suddenly, which was most of the time they tried to move.

I wouldn't discount that her problems could be from the MC, but I would keep looking for an alternate cause as well. I would also ask the doctors, if she didn't have MC, what would they suspect?

Type of Myotonia: Becker

Country: USA