Skip to main content

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!!!!


Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!


What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…


GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: (Porphyria Association Denmark)Denmark: (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…