@daisydo - You know your body well and you don’t give up researching and pushing.
I have other autoimmune illnesses and I’m surprised that many physicians in immunology/ rheumatology are not keeping up with new research.
It is surprising that if you look healthy, you can’t have a serious illness.
My daughter lives overseas and knows she has more than one autoimmune illness- celiac disease, but it’s a struggle to get the healthcare system interested enough to put a diagnosis on other symptoms that affect her daily life.
She knows she has to keep pushing!
I wish you well!