Hi, I have just been diagnosed with myotonia congenita.

It has come as a bit of a shock! I was fobbed off by doctors for the past 7 years saying that they suspected M.E... Even though I told them time again that I don't get any pain.

During my recent pregnancy the symptoms and stiffness became much worse causing me to fall out of my car a few times . I was then referred to a neurologist for testing.

I have not heard of the condition before and feel relieved that there are others out there with similar experiences!

I am more anxious now as I understand that it can be inherited and don't want my daughter to develop symptoms. It is also physically quite challenging to care for a little one... I have found perseverance is key :)

Does anyone have any advice? is there anything accept medication that people find allieviate their symptoms?

Best wishes x

Type of Myotonia: Beckers

Country: England

Welcome, Hattie! It's always a relief to finally get diagnosed!

Since you have Becker's, there is almost no chance that your daughter will have symptoms. She may inherit one recessive mutation from you, but it takes two recessive mutations to cause symptoms of the disease.

If you go to the website link above, there is a link to a page about diet that made a huge difference for me. There are also some natural supplements like licorice root extract and capsaicin which can help some people. The amino acid Taurine has been found to alleviate stiffness in studies. The dose would be 1000-2000 mg per day.

Feel free to ask questions and share your experiences. We all have lots of stories to tell!

Jan

Type of Myotonia: Thomsen's

Country: US