Hi, we’ve been on this road of EM for a little over five years. My daughter has it in her face, ears, hands, feet, and legs. We have been to Mayo Clinic in Arizona and Minnesota and she is received an official diagnosis. She is tried medication after medication after medication after medication nothing seems to affect her. We did get back some genetic test showing that she had a mutation in the SCRN9. A little further testing also showed that she inherited it from me as I have the same mutation. I exhibit a little of the symptoms and have all my life. My daughter has them to an extreme where it is life debilitating. Now that we know it is primary I’m wondering if anyone else who has it as a primary has tried any medications that has worked. I appreciate and take any and all advice. God Bless, Bonnie