My name is Angela Rossi and i was diagnosed with AIP in 2003 and have been receiving Panhematin once a month for 4 days straight and have not had a severe attack since getting the Panhematin. I do get mild attacks every so often but not as bad as they were.
I went through so much testing before becoming diagnosed with porphyria, namely several CT Scans, several MRI'S, several barium studies and several hundred blood tests. What I remember most is enduring a Bone Marrow Biopsy which was extremely painful.
One symptom I deal with seizures. The one i just recently had was a severe one. The way it came on was i had a severe headache and then felt sleepy and then starting shaking all over. i was in my bedroom and could hardly make it to my bed where i fell asleep for 6 hours, i woke up and had several large bumps on my forehead, a black eye and a very severe headache. Come to find out the doctor thinks i probably fell on my way to the bed not realizing it and got up enough to crawl-- literally i mean crawl --into bed and sleep the seizure off. I am currently on several new seizure medications and they seem to be pretty well controlled. I am still dealing with the after effects of the seizure because i had some swelling in the brain caused by a concussion. He said this goes hand in hand with the Acute type porphyria's. I hope this may help some of you and please take care. You know God always tells us he doesn't give us more then we can handle. Please feel free to email me anytime, but put in the subject PORPHYRIA so i may know who it is coming from. My email is firstname.lastname@example.org.