Hi Tyler - Welcome to the forum - it really has been such a boon for many of us, and Jan is a terrific moderator.
I'm also from NYC, though we have lived in CA for 21 years.

I've never taken any meds for this, but I was only diagnosed 5 years ago, when I was 54! I have Becker's, and though it has always been a bit of a demon to live with, I have seldom been incapacitated. Then again, since I was told I was a faker, I busted my rear to prove everyone wrong, and to behave as "normally" as I was supposed to be able to! (how's that for pathetic?)

Have you had the DNA testing, to be sure it isn't another type of myotonic dystrophy? Just from a nursing perspective, please, if you are going to keep taking the Mextil, be sure to be careful - read the potential side effects, and tell your doc about any you experience. I feel really uncomfortable about people taking cardiac medications for non-cardiac reasons. (same with anti-seizure meds).

And I know Jan has listed the names of a few doctors in the NY area who have some expertise with MC... try a search. Even the ones with experience often have limited experience, because there just aren't that many of us!
Here are a couple of threads...
http://pub14.bravenet.com/forum/static/show.php?usernum=1129569505&frmid=140&msgid=680698&cmd=show
http://pub14.bravenet.com/forum/static/show.php?usernum=1129569505&frmid=140&msgid=679216&cmd=show
http://pub14.bravenet.com/forum/static/show.php?usernum=1129569505&frmid=140&msgid=679202&cmd=show

(actually, I think these may be the same thread... but lots of names to consider.)
lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Hi.

I have been on Quinine for over ten years and it has helped substantially. In addition, I have had no measurable side effects.

I am not sure about the other alternatives as Quinine has worked so well for me. I can typically sustain a decent work out. Usually when I get into territory that is out of the norm in my workout I will still get very stiff, but for day to day use, Quinine is a huge improvement for me.

I posted over one year ago about issues I had with United Healthcare and obtaining Quinine, but since my insurance is now with Aetna and I have had no issues.

Good luck.

Ethan

Type of Myotonia: Myotonia Congenita

Country: Washington, DC