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Myotonia Congenita

Posted by kimcvi @kimcvi, Jul 20, 2020

Hello, does anyone here have MC and how to relive muscle pain

Interested in more discussions like this? Go to the Neuropathy Support Group.

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sallys | @sallys | Oct 30, 2025
In reply to @jantzen "Hi all, I was just diagnosed with Myotonia Congenita at age 61. I've been dealing with..." + (show)
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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?

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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.)

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sallys | @sallys | Nov 2, 2025

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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