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A possibility??????
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<blockquote data-quote="DammitJanet" data-source="post: 35030" data-attributes="member: 1514"><p>How interesting to see this illness or disorder mentioned here when it is being talked about on another board I go to...lol. I am going to copy and paste some information that is being posted there for your information.</p><p></p><p>Many of us with the acute hepatic porphyrias called Variegate Porphyria and Hereditary Coproporphyria don't have red/purple urine. We may have fluorescent green, yellow or orange urine during an attack. I was kept from getting a diagnosis for years because I believed that myth and dismissed the possibility of having porphyria because my urine never turned in the sunlight.</p><p></p><p>We have genetically inherited porphyria in my family with sun and chemical sensitivities. In my youth the attacks were typified by abdominal pain after eating certain foods or being exposed to chemicals or most medications, or flu-like symptoms if I was exposed to sunlight. I only get a red, lacy-like rash from sun exposure but my mother and others in my family actually get purple freckles and blisters.</p><p></p><p>I was diagnosed with MCS in the 80s, but that still didn't explain the severe abdominal pain and MS-type symptoms. I was checked for lyme, MS, and other neurological conditions but they were all negative.</p><p></p><p>It wasn't until I started studying our family's genealogy and contacted my grandfather's "first" family that I found aunts, cousins and many extended family members with the same symptoms. An aunt that I never knew died from cirrhosis of unknown causes (and had never drunk alcohol).</p><p></p><p>We cannot tolerate alcohol, foods high in sulfur (broccoli, cabbage, garlic, onions, etc), environmental chemicals like paint, solvents, car exhaust, etc. and hundreds of medications. Most of us do have fibromyalgia symptoms.</p><p></p><p>It is VERY difficult to get a confirmed diagnosis. It's a long story, but the politics in the US are such that a person has to have ridiculously high levels of porphyrins in urine/blood/feces (depending on the type) to be diagnosed. The standards in Europe are very different and now that DNA testing is becoming more widely available it is obvious that it is much more common than originally thought.</p><p></p><p>The other problem with diagnosis is getting samples that aren't degraded by improper handling and exposure to sunlight. You also need to be having a severe enough attack for porphyrins to be elevated.</p><p></p><p>The Canadian Porphyria Foundation has a lot of good information that you won't find in the American counterpart. Many people report sensitivity to fluorescent lights, x-rays and of course chemicals. (Some of the porphyrias don't seem to be affected by chemicals in the environment.) The Canadian organization also has a drug list (of medications that can trigger attacks).</p></blockquote><p></p>
[QUOTE="DammitJanet, post: 35030, member: 1514"] How interesting to see this illness or disorder mentioned here when it is being talked about on another board I go to...lol. I am going to copy and paste some information that is being posted there for your information. Many of us with the acute hepatic porphyrias called Variegate Porphyria and Hereditary Coproporphyria don't have red/purple urine. We may have fluorescent green, yellow or orange urine during an attack. I was kept from getting a diagnosis for years because I believed that myth and dismissed the possibility of having porphyria because my urine never turned in the sunlight. We have genetically inherited porphyria in my family with sun and chemical sensitivities. In my youth the attacks were typified by abdominal pain after eating certain foods or being exposed to chemicals or most medications, or flu-like symptoms if I was exposed to sunlight. I only get a red, lacy-like rash from sun exposure but my mother and others in my family actually get purple freckles and blisters. I was diagnosed with MCS in the 80s, but that still didn't explain the severe abdominal pain and MS-type symptoms. I was checked for lyme, MS, and other neurological conditions but they were all negative. It wasn't until I started studying our family's genealogy and contacted my grandfather's "first" family that I found aunts, cousins and many extended family members with the same symptoms. An aunt that I never knew died from cirrhosis of unknown causes (and had never drunk alcohol). We cannot tolerate alcohol, foods high in sulfur (broccoli, cabbage, garlic, onions, etc), environmental chemicals like paint, solvents, car exhaust, etc. and hundreds of medications. Most of us do have fibromyalgia symptoms. It is VERY difficult to get a confirmed diagnosis. It's a long story, but the politics in the US are such that a person has to have ridiculously high levels of porphyrins in urine/blood/feces (depending on the type) to be diagnosed. The standards in Europe are very different and now that DNA testing is becoming more widely available it is obvious that it is much more common than originally thought. The other problem with diagnosis is getting samples that aren't degraded by improper handling and exposure to sunlight. You also need to be having a severe enough attack for porphyrins to be elevated. The Canadian Porphyria Foundation has a lot of good information that you won't find in the American counterpart. Many people report sensitivity to fluorescent lights, x-rays and of course chemicals. (Some of the porphyrias don't seem to be affected by chemicals in the environment.) The Canadian organization also has a drug list (of medications that can trigger attacks). [/QUOTE]
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