Quote:
Originally Posted by Hawkeye50
I like most of you have Porphyria CEP/HEP ( Lucky me right?) I have a question for everyone. Does anyone elses physician seem to be scared to treat them? Anytime I have a minor flare up and need a need just a few prescriptions for pain or the swelling she always doesnt want to see me and tells me to go to the ER and she will send my files. When I first met this doctor I even explained she cant be timid and what not but she only likes to see me if its just for my blood work and urine test.
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Sorry to hear that. My daughter's doctor is great. Very knowledgeable about this disease. He sees about 2 cases a year here in Kentucky. She is having an attack this week and getting the hem in medicine. Hate this disease.