- CASE FILE
Ehlers-Danlos Syndrom and Postural Orthostatic Tachycardia Syndrome. I may also have some other rare disorders that are connected.
ABOUT THIS CASE FILE
I am 38 years old and I was diagnosed with Ehler's Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome in 2016. I was misdiagnosed most of my life. I may have some other rare disorders that are connected to the ones I have already been diagnosed with, but I live in Northern California and there aren't any doctors in the area that treat the disorders I have or even know what to look for to diagnose the others. I have so many symptoms and I can't keep track of them or get any of them under control. I am about to loose my job. I have lost almost every job I've had in the past 25 years due to my medical issues. I do not have good reactions to pain pills or physical therapy. The physical therapists usually don't know much about EDS, so they have me do exercises that aren't good for me. There are medications that can help with some of the symptoms, but if it helps with some of the symptoms, it usually makes other symptoms worse. I really need a doctor that will listen to me and that can help me find a way to manage all of this pain and the multiple symptoms.