After 7 years of misdiagnosis, I’m finally getting legitimate answers for what has been medically wrong with me! I got so fed up with my DR’s I insisted on getting all the tests I needed, and am now getting multiple legitimately accurate answers for my chronic illness! The Dr. ruled out Osteopathic POTS from my blood tests yesterday, and found it’s definitely POTS stemming from Autonomic nervous system issues ( I had Chronic Epstein Barr for 3 years straight in MD, and it started the spiral of illness). I got the first test for EDS (9/9 on the Beighton score!) I’m also finally getting the biopsy testing done for Mast cell activation syndrome and Small fiber neuropathy. It’s such a relief to finally know there were legitimate reasons for why I’ve been so ill!
I have to thank Kendra Neilsen Myles for being a phenomenal educator, advocate for EDS, POTS, and Dysautonomia awareness. Without your exceptional knowledge, advocacy, and selfless care for others suffering from invisible illnesses, I would never have ever taken the steps needed to get properly diagnosed. You are a hero, Kendra! I can never thank you enough for helping to save my life. Thank you, from the bottom of my heart!