I’m posting this story not because of the illness itself, but because the story really illustrates how frustrating it is to see multiple doctors, of many different specialties, who all tend to think within their narrow specialty focus. This is why we all have to do our own research and try to assemble all of the pieces of the puzzle.
For three years her skin ulcers and pain would flare, then vanish, stumping doctors. Her daughter, a nurse, finally figured it out.
https://www.washingtonpost.com/national/health-science/for-three-years-her-skin-ulcers-and-pain-would-flare-then-vanish-stumping-doctors-her-daughter-a-nurse-finally-figured-it-out/2019/04/19/b8b4da38-5481-11e9-9136-f8e636f1f6df_story.html