WHAT ELSE CAN IT BE IF IT IS NOT ACUTE PORPHYRIA? Many of you have had negative biochemical and negative DNA results. Please note the list below of possible other diseases that ppl ,who were positive they had acute porphyrias , have discovered they had instead: of porphyria:
These include disorders from metabolic and mitochondrial diseases: Complex Regional Pain Syndrome, paroxysmal nocturnal hemoglobinuria (Ab and back pain, dark urine, headache, shortness of breath, blood clots), Malonyl-CoA Decarboxylase (Patient is one of about 20 ppl dx'd with this, and first one dx'd genetically), Glucose-6-phosphate dehydrogenase deficiency G6PD (ab and back pain, dark urine, fatigue, dizziness, rapid heart rate, shortness of breath, and fever are triggered by even tiny amounts of soy, citrus fruit, blue dyes, or Vitamin C), MCAD/MCAS, glycogen storage diseases, Wilson's Disease, Mediterranean Fever and CPOX4 (like porphyria but MUST have mercury exposure to set it off), Mast Cell, Lyme disease with more intensive tests, Ehlers Danlos, some liver and kidney diseases and lead poisoning. It is sad also to say that there are thousands of rare metabolic diseases, so hang tight and don't let that stop you seeding a diagnosis.
Many people have been prescribed an unsafe drug, so remind the drs, nurses and dentists. Even certain foods can cause the dark urine seen in acute porphyria, like fava beans aloe, rhubarb.
Dont forget this good advice ' THOSE WHO KNOW THE MOST , DO THE BEST!!!!