Return to Website

Myotonia Congenita Forum

 

This forum has been closed for comments.  You can still search archived messages.

 

Visit  the Non-Dystrophic Myotonias  Facebook Group

Myotonia Congenita Forum
Start a New Topic 
Author
Comment
great site

Hi All.I have been living with thomsens all my life. I am 57 and was diag. when I was 26. having read jims stuggle from childhood brought back memories, not good.I would like to join your group and if I can help in any way you just have to ask. Just went back for retesting in toronto and will be trying new meds. Will keep in touch and let you know results. Great site craig

Type of Myotonia: thomsens

Country: canada

Re: great site

Welcome, Craig! Glad you found the forum. It will be interesting to see what your testing shows now that DNA sequencing is available.

Keep us posted -

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: great site

Thanks jan. I have taken many med 30years ago but dont remember what they were.Only dilantin i remember, so they put me on acetazolamide for 3 months to see if it helps.What did everyone else take.The reason I went back for re-testing is because my legs are really sore when I get home from work. They told me that it could also be just age. great!!!I will keep in touch craig

Type of Myotonia: thomsens

Country: canada