Hi all,
I was just diagnosed with Myotonia Congenita at age 61. I've been dealing with muscle pain and stiffness for many years as well as elevated CK levels. I had a muscle biopsy which showed both hypertrophy and atrophy, and recently underwent genetic testing which came back with the diagnosis of MC. I have an appointment with my neurologist this week. Questions I plan on asking him: 1. Is it Becker's or Thomsen? 2. Should I try meds (the side effects don't sound like fun). 3. Should family members get genetic testing?
Have any of you tried medications to treat MC? How have you found them?
This morning I had an episode lasting half an hour during which I couldn’t speak properly. My diaphragm, vocal cords and mouth did not want to co-operate. It gradually wore off.
I have had other episodes in the morning during which my torso felt as though it was filled with cement and I had trouble expanding my chest enough to get a decent breath.
If I do have MC, these episodes seem to be caused by lying still over night, and they then wear off with the “warm-up effect”.
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@jantzen, have you had symptoms since you were young, or did they start in adulthood?
I am suspected of having adult-onset MC, which can be triggered by pregnancy and hypothyroidism, although neither of those apply to me.
Having a dig around on the PubMed database for recent articles is a good idea for learning about medication options.
(I can’t post a link yet due to being a new member of this forum.)
This morning I had an episode lasting half an hour during which I couldn’t speak properly. My diaphragm, vocal cords and mouth did not want to co-operate. It gradually wore off.
I have had other episodes in the morning during which my torso felt as though it was filled with cement and I had trouble expanding my chest enough to get a decent breath.
If I do have MC, these episodes seem to be caused by lying still over night, and they then wear off with the “warm-up effect”.