Ashley,

Sorry I didn't get to welcome you sooner! I was at a conference last week with no access to the forum so I'm catching up.

Jenna gave you some great information and you can also look at some of the resources on the main website (click on "return to website" above. The letter for school staff has a lot of basic information about MC and there is a page about the diet that I have used most of my life.

I have tried many supplements over the years and out of all the different vitamins, minerals, herbs and amino acids I have found two things that do seem to be very helpful. One is the amino acid Acetyl-L-Carnitine, and the other is the herb Licorice Root. I take 500 mg of the carnitine per day and one capsule of licorice root powder (I use Nature's Way brand).

The carnitine seems to increase ATP or at least spare it so that our muscle cells aren't damaged as easily, and the licorice root causes excess potassium to be lost in the urine. The only contraindication for that would be high blood pressure. I have never used any medications for the myotonia, but before I started the diet I was so stiff all the time I was always getting hurt and was even afraid to answer the phone at times because I sounded drunk. The goal is keeping insulin levels stable so that you don't cause excess adrenalin output. Also sugar uses up phosphorus, and we have a very high demand because of the constant firing of the muscles.

If you can email me a copy of your DNA test results I can look up the specific mutation or mutations and tell you more.

Jan

Type of Myotonia: Thomsen's

Country: USA