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WandtmacWWandtmac Posts: 122
edited 06/11/2012 - 8:41 AM in Chronic Pain
Anyone here ever diagnosed with Porphyria? This is a rare condition that I have only found information on the net about. I haven't found anyone with or know anyone with this condition.
They said it explains everything that has been happening to my body and now they are contacting university to find the best treatment options for me. From what they have told me and I have read this can be very serious.
Thank Ya,
Traci Mac


  • Which exact type have you been diagnosed with? (there are several). There is very specific testing for it - for example when they draw your blood it cannot be exposed to light and all or can give false results (the vials should be wrapped in foil)! Also, psuedoporphyria is believed to be more common than porphyria, and is caused frequently be naprosyn (Aleve) and has been reported with muscle relaxers too.The hematologists are the best doctors to diagnose and treat this condition, I strongly recommend a university hospital just for the sake of the labwork being done correctly.
  • Have you checked out this website?


    Best to you,

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