To answer your question, I was officially diagnosed by an excellent podiatrist named Dr. Kelly Stagg in northern Utah. This is after asking every doctor and specialist I came across for 7 or 8 years if they had heard of EM. It was the only thing that fit my awful symptoms. No one had heard of it and one of them was frankly a big jerk about it and acted like I was a total moron to think I could possibly have a rare disease. I never thought to go to a podiatrist because I was so sick overall. But when I did, I had an answer at last. And then my GP, Dr. Grace O’Brien, learned all about it and was able to diagnose a few of her other patients.
I have just bought and recieved my 23 and me test on Amazon prime day. It was half off, so $100 instead of $200.
I had a pharmacogenetic test a few years ago which tested for genetic polymorphisms in areas that make enzymes that break down medications. But it doesn’t test for other genetic problems or EM. I got in during a time period where they were not charging very much for that test so they could get more business.
My results make a lot of sense. Among others, my CYP2D6 gene is messed up, and that one little SNP (called a snip, or spot on the genetic code) is supposed to create enzymes for 25% of all medications. And I do mean ALL medications. So I don’t make nearly enough enzymes and I react to things with prejudice. And if I take opiate painkillers it is really compounded, as though I took a huge dose or something stronger. And other meds react that way too. I have a lot of dystonic reactions. One nearly killed me. But they are all scary and painful.
My sister reacts to meds like I do, but she does not have EM. I don’t think my EM is primary but you never know.
Surprisingly, I have had a lot of dramatic systemic relief lately from a low oxalate diet, which can cause burning feet. It hasn’t cured my EM but the rest of me is doing a whole lot better. It might be giving my EM some relief, but I am not sure yet. I will start a new thread abput it if this keeps going. (Btw, if anyone tries that diet - PLEASE start very gradually. The doctor neglected to mention that when he put me on it and uggghhh.) For now, it is still early. But amazing.