RP, when I suggested calling Mayo porphyrin labs for the protocol for testing for Porphyria, I didn't mean to go to the Mayo clinic as a patient. I meant to get the protocol for testing from the lab where your specimens would be sent. Then any doctor can order the tests. But you have to watch out for the lab which sends the specimens. Since you are close to Mayo, it might be a good idea, if you test, to drive your specimens down in person. Much more likely to get a true result to your tests. However, the Mayo clinic neurologists can certainly send the test for you if you consult them. It's very expensive to go to Mayo and I know the 60% coverage is not much with their high bills, and they tend to want to test you for everything in the world....which in your case could be a benefit, as you are in limbo. Just saying that you can get this tested without going to the Mayo Clinic clinic. Their porphyrin labs are the main test labs for this disease.
I was at Mayo Scottsdale this year and last year, concerning my other disease, Polycythemia Vera. Their neuro was terrific! I forget his name, as my main doctor there was the hematologist, Dr. Cammoriano. But I was sent to the neuro too because of the complete workup Mayo gives. It would have cost thousands if I had not had Medicare and Aetna.
I had p32 shot in March for my other disease, Polycythemia Vera. It cut down my blood platelets.