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Re: Empathy

Jessica, glad you checked in! It was hard for me to keep up with three kids, but somehow we made it through :-)

If you want to email me a copy of your test results I can look up the mutations. There have been cases of spontaneous mutations, but it's very rare. Did your parents have DNA testing or an EMG? There are some mutations that can be associated with both dominant and recessive myotonia.

If you haven't checked out the Facebook page (the link is above) you might want to post on there, too. It isn't just for myotonia congenita, but you'll find lots of empathy and you can show your husband the posts so hopefully he'll understand better the daily challenges.


Type of Myotonia: Thomsen's

Country: US

Re: Empathy

Hi Jessica:

I don't have kids but I understand the level of energy they take, and I know where you are coming from. I've don't really know what it's like to feel young, and I often imagine all of the things I would have done in my life if I didn't have MC. When I was a kid I wanted to skateboard, and BMX, and ski jumping looks pretty fun too. I definitely would have joined the military....I tried to get to a point that I could but it was a losing battle, and it just would have been nice to have the level of energy and mobility of other people.

I don't really expect other people to really understand the disorder, because most people can't really understand that which they can't see and have never experienced, but I do ask them to just take my word when I say I can't do something.

Type of Myotonia: Becker

Country: USA

Re: Empathy

Hi Jessica,
If you go to the top and do a search by typing in the word Expectations, you will encounter a thread that I began, and to which Jan and Jenna and others responded. It has helped me a great deal, and I even copied the post, printed it, and gave it to my children. I hope it helps. Don't give up on yourself, no matter what others say. You have many who understand. I believe we "step up our game" every time we do anything at all that is normal for most people.

Type of Myotonia: Paramyotonia

Country: USA