I was tested for Porphyria in October of 2015. The specimen was a 24 hour urine collection that ... suggestive of this condition, however there was no treatment provided or additional testing to confirm. What... View answer

porphyria and have to have phlebotomy treatments at Ferritin above 50. 143 is the highest I've ever been. Today, my ALT measured at 68. It was 32 in December 2015. People with porphyria are at high risk of ... View answer

Is/are there type(s) of porphyria that can cause edema and metabolic neuropathy? How can I best learn more about hereditary diseases that might fit my symptoms? ... View answer

In September 1986 my wife (born 31 March 1937) was diagnosed to have Acute Intermittent Porphyria .... We are wondering now what might have caused this phenomenon. Thank you very much in advance for any ... View answer

I am a 47 year old Caucasian female. I have the following diagnoses: interstitial cystitis , porphyria (possibly peudo-porphyria), essential tremors, peripheral neuropathy , lumbar spondylosis ... View answer

intermittent porphyria. lately i have been having major issues regulating my body temperture. im constantly clammy and sweaty or super hot and super sweaty or freezing. can you tell me what the... View answer

results are inconclusive as athe doctor is wanting to rule out cutaneous porphyria. What is the possibility that this diagnoso might mean wowerelf porphyria? ... View answer

doctors don t know what we are talking about. Our Aunt passed away from porphyria when she was a young woman. What do we need to do to determine what form of porphyria we each have if at... View answer

My daughter has symptoms of acute intermittent porphyria, her immunologist tested for porphyria but ... immunologist says there is no reason to retest. We can easily trigger an attack, 2 know porphyria... View answer

Hello. I am asking questions about my daughters illness. her dad had porphyria cutana tarda. she .... headache and we need to rule out porphyria or diagnose and be able to treat. we are in boise Idaho. please... View answer