Is there a genetic test for primary EM?
Yes, I had genetic testing last summer. Thankfully mine came back negative for primary so def got secondary and know that I haven't passed it onto my daughter.! They look for a certain gene but without digging out my paper work can't remember which one.!
I assume it is the SCN9A gene? Any details you can find from your paperwork that may help point my doctor in the right direction as to what this test is called and how it’s administered would be helpful. Thanks!
Dave
How is the test administered? I definitely want to look into this.
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