@becsbuddy Yes, I have seen so many doctors, & certainly plenty of them since becoming breathless. - I've got other rare conditions like ehlers danlos, POTS, chronic migraine, and been unwell since my early 20s - also a doctor partially severed my occipital nerve, which has required a lot of surgeries.
Yes I have a primary doctor who's very good, but he can help me no further The same with my neurologist.
When my Dad was ill, & then my sister, the doctors detected autoimmune involvement, & they keep sending blood samples to expert autoimmune labs, but they say its not one they've come across before (worldwide), although they are finding more autoimmune diseases all the time... so maybe one day they will find it, but until then..... on we plod!! I do suspect the autoimmune component has been active since my illness first began, but I really don't know .
My primary care doctor said he does not know how to stop.me going downhill, all he can do is monitor things - so I don't think much would be achieved by making an appointment with him unfortunately.. Thanks so much for your kind help 🙏 💓