@rogie Oh, oh, I am so sorry about your wife’s death. What you might want to remember, is that autoimmune diseases are barely known to the medical fields. The focus has always been on the long known AD like lupus and multiple sclerosis and now, diabetes. So many new diseases are being recognized and most doctors don’t know how to treat them. When i was diagnosed with clippers in 2018, not ONE doctor knew what it was. The neurologist recognized the MRI but had no idea how to treat it. Luckily, there was 1 doctor at the university medical center who did know about the disease and she has overseen my care since.
You said that you would “like to bring this issue to the front”. Have you thought about being a patient advocate?
If this interests you, i could pass on some resources. What do you think?