Friday, December 5, 2008
APF Links And Other Stuff
There are a ton of links out there and articles leading back to the APF website and you may wonder why I don't have them. If I tried to explain you would be turned off by the first few sentences but the bottom line is if you need the information it's easier to find than my blog and if you ask I will direct you there. If you are denied help there do not give up until you have been proven to not have Porphyria. If your levels aren't high enough for diagnosis be sure you are in attack when testing and there have been people turned away who did in fact have Porphyria but the tests were done too late to be conclusive. With some types the porphyrin levels go down within days. The sooner you are dx'd the better and the less chance of developing peripheral neuropathy. Many stories out there about people who were tested many times before they fially got a positive test. There is huge controversy over what a "positive" test is. If you have a positive PBG you have to assume the life of a Porph until you can confirm you do not have it. A temporary dx won't kill you but an undiagnosed attack can. Avoidance of triggers is all that's needed until you are sure.
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My PBG was positive and my porphyrins were high but the expert has risen the "upper limit of normal" to exclude those that may be coming out of attack and weren't tested fast enough. Family history was discounted and yadda yadda and "further testing required" even though my mother sister and daughter carried a dx. One of my tests was taken out of the freezer and thrown in the yard by my children and I had no clue it would cause so many problems later. We will never know what the results of that one would have been if it had been done correctly. But my dx still stands thanks to a doctor who knows a duck when he sees one.
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