My experience was perhaps similar to yours. I ended up with three diagnoses, MS, Porphyria, and (later) Polycythemia Vera. The Porphyria is genetic and I had it all my life but symptoms were rare at first and not diagnosed. Then MS came in as a dx when I got Optic Neuritis (please see my lengthy post just made on the thread for Optic Neuritis). I believe I have both of these in synergistic combo, but I stopped seeing neurologists when I found I was doing everything I could do for my condition without their help.
Later I developed another genetic malfunction which is NOT hereditary, Polycythemia Vera. In this disease the "'phils" are usually not normal but the doctors don't pay much attention to them--they are looking for changes in red cell and platelet counts. For this disease I see hematologists. So you might possibly add hematology to your long list of "who to see". Polycythemia Vera or its cousin ailments should be pretty easily dx'd by a CBC (regular blood test) and perhaps a test for the JAK2 mutation, which would be diagnostic if positive. This disease I got much later in my life, but I don't think it would hurt for you to be checked out for abnormalities in your blood panel. Maybe this has already been done.
I have learned over the years how to manage my illness with diet and avoidance of triggers. My pcp and her assistant are wonderful in helping me avoid drug triggers, and an online Porphyria group has provided the rest of the triggers. For my Polycythemia Vera I went twice to Mayo Scotsdale for p32 radiation, which has now stabilized my red cells, so I haven't needed phlebotomies now for four months. I think Mayo Scottsdale is very good for hematology--they even verified my Porphyria (even though that was not what I was there for at the time). I saw Dr. Cammoriano there (hematology) and also was sent to an outstanding neurologist.
This sounds confusing but you too have a confused picture. Hope it clears as much as it can.