Most doctors know little to nothing about porphyria. They can hardly be blamed, though, as it is so rare. But, that really causes us lots of problems. I have found a few that know about it; and, it really makes sense how it has worked out.
Hematologist – Of course, a blood doctor should know about porphyria. My hematologist tested me positive for porphyria; now, I have an advocate! The test was the 24 hour urine test; I tested positive & I wasn’t even having an attack. He said this is the first positive urine test from any of his porphyria patients. I am truly blessed for having taken the risk to schedule an appointment with him.
Neurologist – had a nerve conduction test in relation to carpal tunnel. This doctor was very familiar with porphyria. He said that he generally sees people who suffer from porphyria as a result of seizures caused by antibiotics. Antibiotics are scary things for us.
Dermatologist – I went to see a dermatologist as a result of bacterial infection on my skin. He was very familiar with porphyria, especially the cutaneous types. That makes sense. He was not very familiar with AIP; but, he did understand my problems with antibiotics.
Dentist – My dentist is very conversant in porphyria; I should ask him if he has just done some good research or has had other patients…probably the latter, as I seem to remember that he knew about it the first time I brought it up. He may be unusual, though.
Liver Specialist – NOT! I saw one of the foremost liver specialists in Atlanta & he was contrary & clueless. He made me very sick; I ended up in the hospital with pancreatitis.
Gastroenterologist – NOT! I saw several of these clowns. They, too, were contrary & clueless….and, made me very sick.
General Practitioners – talk about hit or miss. I even had one suggest that I induce an attack so he could run a blood test on me. I have found that I get much better care asking to see the PA.
Opthamologist – Maybe I am just lucky. But, when I told my opthamologist about porphyria, she researched it to find out what signs to look for in my eyes. It is amazing the medical problems that can be determined by examining the eyes.
Before I had an official medical advocate, I used to just tell medical folks that I had irritable bowel, hypoglycemia, various allergies, etc. It caused a lot less friction. We were all much happier with their ignorance.