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Myotonia Congenita

Neuropathy | Last Active: Jun 17, 2023 | Replies (154)

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@larryh123

I have a form of a myotonic dystrophy (MD II) which causes similar muscular issues you are facing (pain, weakness, muscles not relaxing - staying tensed) I also have pain issues that aren’t easily managed because of it.
I also have some other conditions that makes the meds list I can take short.
My neurologist (Mayo) tried Baclofen but we didn’t have much luck.
I know it is not possible for many folks to find a way to stretch. I had some home health care last year. They showed me ways to stretch even if you cant get out of bed. I have found that a good daily stretching routine has helped with mobility and some pain. It can help with the stiffness and not wanting to relax the muscle which likes to stay contracted.
It is definitely hard to find docs that deal with these conditions - many have never heard of it.
Here is a link - which you have already looked at but might be a good starting point for finding something in your area Ike an
MDA Care Center. Mayo here in Jacksonville has one. The MDA.org site - https://www.mda.org/disease/myotonia-congenita has some search tools to find them in your area.
Hope this might help.

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Replies to "I have a form of a myotonic dystrophy (MD II) which causes similar muscular issues you..."

Hello @larryh123, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing your story and what helps you, especially the tip about ways to stretch even when you can't get out of bed and finding a daily routine to help with mobility and some pain management.

I posted the link to the MDA.org website so that it appears in your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam, but will help members locate an MDA Care Center near them.

Can you share what you were searching for when you found Connect?