I am so so glad I have you and this forum to bounce things off of. I was wondering why no one else with myotonia had discovered this new wonder drug. I will follow your advice and look into this further before giving him something that will probably make things worse. Actually he is doing really well right now on the quinine and I would not switch at all but he has been on it for so long and I do worry about the hearing loss down the road. Also his neurologist said some people are having their insurance deny it. So that could be an issue at some point. Thanks again for the help.

Type of Myotonia: Thomsens

Country: USA