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Porphyria


Lemons2lemonade

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Funny, I just got tested for this a couple of months ago! I have alot of the symptoms, like my skin feels like it is literally fire-burning when I get out in the summer sunlight. My blood test showed negative, but I honestly thing the urine and stool are supposed to be much more reliable. I think it should be looked at more in depth for me. I know they usually get a mauve color to their urine, but I get a gray-blue.

Okay, this is interesting. So why have a few of us been thought to have Porphyria, a rare disease???

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Everytime Drs. see my son's urine they freak out. It is a dark, dark orange color (and when it dries like on the rim, it is pink). It has been tested, and tested and been this way since he was a toddler. The tests are always perfect. Had a 24 hour test last year but that was for a Pheo which was neg as well. I have just been looking at this possibilty night before last.

I have looked at it b4, too. the thing is he has no pain and they talk so much about pain and having attacks and his is like this every day for his whole life and I can't say he has the type of pain they seem to talk about. He has been super sensitive to the sun from time to time (pins and needles and rash when the sun directly hits his skin but even then that isn't often). I hope someone has more info on this one.

Thanks for bringing this up :)

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I have. The symptoms of POTS and porphyria have a lot of overlap because porphyria usually affects the ANS. My first doctor was so sure I had it, because everything fit, right down to the pain and history of anxiety.

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