Monday, April 9, 2018

Medical Moment by Desiree Lyon

Medical Moment by Desiree Lyon

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:
Thanks to Mary Schloetter who helped me put together this list of diseases !!!
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.
Certain medications can cause the dark urine often seen in porphyria attacks, namely , anti-malarial drugs, laxatives containing sienna. And , of course the unsafe drugs that precipitate an attacks must be heeded very carefully. Check the Safe/Unsafe list on the APF website whenever you get a new prescription. dont just think the dr knows tha the drug is safe.
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.
It is essential to find the correct diagnosis so that you have a chance to be treated or cured. Now that is not easy usually as drs may not be able to diagnose , you may not be able to find the answers.
Dont forget this good advice ' THOSE WHO KNOW THE MOST , DO THE BEST!!!!

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