What they said!
(I could go on a rant about this, but I won't) - - -
But please... either present your physician with some comparative information on the 2 conditions, and some of the threads here, and the rationales for determining the CORRECT diagnosis, and not just a ballpark guess - or find a different doctor. I'm steaming!! Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Thanks for all the replies everybody. Procainamide has really helped me. I don't know why Emory doctors prescribed this, I am not a medical doctor and trusted my doctors. This is what they prescribed and it worked. My doctor in Carrollton, GA and now in Douglasville continued it all these years. Now it has been disconintued and I will be starting Mexitile as soon as my order comes in from Canada (am having tremendous difficulty filling the prescription for 100 mg.) I found some on canadadrugs.com. Other than that I couldn't get it. I have a week supply left. I feel really stupid now as my primary care physician told me not to worry as this drug would offer "added protection for my heart" like it was a good thing to be taking it. I have tried before to go without it and I can tell a real difference, especially up and down stairs and getting up in front of a crowd and my legs freezing up. It works for me so the doctors kept refilling it.

Type of Myotonia: Myotonia Congenita

Country: USA

I didn't realize Procainamide had been discontinued. I did a search and found this warning:

"WARNING: The prolonged administration of Procainamide often leads to the development of a positive anti-nuclear antibody (ANA) test, with or without symptoms of a lupus erythematosus-like syndrome. If a positive ANA titer develops, the benefit versus risks of continued Procainamide therapy should be assessed."

Maybe that's why it was dropped...I've always wondered why it was not routinely prescribed for MC since similar drugs are used off-label for myotonia.

Hope you get your new prescription soon so you don't have to go through a Frankenstein week :-)

Jan

Type of Myotonia: Thomsen's MC

Country: US