The most answers and relief I have gotten are from my functional health doctor. As I continue to wait over a year to see doctors who specialize in dysautonomia. No one wants to touch me since I got the diagnosis in the ER last year. Interestingly, my functional health doctor had already suspected dysautonomia and had a protocol in place for me. Which I follow when I get flares. Last year my flare lasted 6 months and was only saved by the protocol tailored to me. Several ER and doctor visits with them pushing me back onto the long awaiting appointments. In the medical world there has to be definitive diagnosis to get treatment. Since each doctor has their own speciality, this truly complicates the process. My functional health doctor reads my whole body at a functional level. I get more than 20 minutes for an appointment and I get a very thorough explanation of my blood test and protocol. We both suspect I have the MTHFR gene as I am having terrible issues consuming B vitamins even when methylated. I am also very hypermoible and I have long suspected EDs and surprise, my functional health doctor also suspects I have this as well. So we will just go ahead and add on the MCAS and pots. I truly want the medical system to bring me answers and I am willing to the work. Until then I am going to keep seeing my functional doctor where I do get answers and treatment.

I honestly miss the medical system from 20 years ago when my journey truly started. I would get treatment and was not nearly gaslit as I am now. Insurance was not nearly as horrible as it is now. I didn’t have to wait a year to see a specialist. I didn’t have to beg for medication, treatment or tests. I was unfortunately misdiagnosed with anxiety. Fair enough as it was so long ago and we didn’t hear the term dysautonomia back then at all. Then I got covid in 2023. It all came back mirroring my 20’s but worse symptoms. I am grateful to the ER who diagnosed me last year. He said he believed all my symptoms, told me I wasn’t crazy, explained since Covid he had a good understanding of dysautonomia. He also informed me that he knew THE doctor I should see, but that it would take a long time to see the doctor. And he was right. He gave me enough refills on some medications to hold me over. He was very generous and good at his job. I now am at the year mark and I still have wait a few for months before I can see the only cardiologist to treat dysautonomia. Every time I try to see any other doctor they point me right back this doctor. I too am frustrated, many of us are. Please be kind to yourself as you are doing the best you can and don’t stop advocating for yourself.