How hard was it for you to get diagnosed/find a doctor familiar with MCAS?
I have hypermobile ehlers-danlos syndrome, POTS, severe unexplained IBS, Barrett's esophagus from GERD, small fiber neuropathy, Hashimoto's disease, Hidradenitis Suppurativa, severe allergies, chronic idiopathic urticaria, and a laundry list of other illnesses. Most of my illnesses all stem from the same evil entity that is hEDS. I am writing on here to ask you how hard it was to find a doctor familiar in MCAS? I struggle greatly finding anyone familiar with it, let alone willing to test for it. Despite having overwhelming evidence that I could have it due to having ehlers-danlos syndrome and already existing severe stomach problems and allergies, it has been impossible for me to find anyone knowledgeable on this condition. It is hard enough for me in a smaller city in the desert to find doctors familiar with my main condition (hEDS) let alone MCAS. What has helped you find out more? What has helped you advocate for yourself and seek answers? I am getting so exhausted of having constant stomach problems, hives, itchiness, swelling, allergies, sickness, etc that is so unpredictable and rampant constantly. Any thoughts or experiences would be greatly appreciated. #MCAS #HEDS #EhlersDanlosSyndrome #MastCellActivationSyndrome #mastcellactivationdisease #EDS #EhlersDanlos #Chronic Idiopathic Urticaria #POTS #HashimotosThyroiditis #hashimotos #barrettsesophagus #IBS #GERD