My son's neurologist is having him try Aminopyridine for his Myotonia to see if it can help him back off of the high dose of Quinine Sulfate he is on. He will start out at low dose and gradually increase over the next 3 months. It is just as expensive and must be obtained from a compound pharmacy but she thinks it is a good alternative to Quinine as far as long term side effects. I was wondering if anyone out there has tried it and what their opinion is. Thanks.

Type of Myotonia: Thomsen

Country: USA

Trudy, I don't know why on earth his doctor would think that's a substitute for something like quinine. It's a potassium channel blocker and actually causes muscle contractions. MS is kind of the opposite of MC where there is poor muscle tone and under-firing of the muscle cells.

I would suggest calling a pharmacologist and talking to them about it, preferably a pharmacology professor at a university. Also call the company and ask if it is safe to take.

I remember your son had tried some other medications, but the ones that are used for MC are Mexitil, Tegretol, Dilantin, Diamox, Flecaine and Lamictal.

Jan

Type of Myotonia: Thomsen's

Country: US

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