Hi, Just wondering if anyone out there has this disease? After 6 years of testing for gastrointestinal problems,multiple emergency room visits, and various other tests. I finally had a doctor to recommend being tested for Acute Intermittent Prophyria.I did research on the internet and was amazed, I find that I suffer from every symptom of this rare disease.My mother passed away a few years ago when the portal vein in her liver collapsed. My Grandfather, her father had Lupus and I also have a cousin who has suffered for years from the same symptoms that I have and his doctors are baffled and so far have been unable to diagnose his condition. I just got the results from two 24 hour urine test done during two seperate attacks that landed me in the emergency room.The results came back negative on both.My question is how hard is this disease to diagnose? I have read that it is not uncommon for this tests to be misinterpeted by doctors that are not familiar with this disease. The doctor that did the last test (a hemotologist) has never treated anyone that has had this so I assume he is not familiar with it. I would like to know if anyone thats been diagnosed with AIP has had similar problems with testing. Any information would be appreciated.Reply Follow This Thread Stop Following This Thread Flag this Discussion
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