Who do I see for porphyria?
Are there any doctors at Mayo Rochester , or in MN, that specialize in Porphyria? I’m lost, as it a rare disease. High urine porphyrins, all symptoms and acute attacks are severe.
To complicate things, I also have have nodal marginal zone lymphoma, sjogrens, pernicious anemia/b12 deficiency and other malabsorption/deficiencies. High kryptopyrroles indicating pyroluria , substantiated by b6 deficiency ( awaiting zinc and copper labs).
I’m not a dr, I can’t continue to find these things on my own at my own expense and once found, I certainly cannot treat.
Can anyone point me to some doctors with specialty these conditions?
I have specialists for Sjögren’s and lymphoma, the rest are positive tests, no official diagnosis and nowhere to turn.