Acute Intermittent Porphyria

I had my one and only attack about 2 years ago. It manifested itself as severe nerve pain as if someone was peeling the flesh off my bones. The first hospital gave me pain meds that actually made it worse....they thought it was just in my head. Finally the second one figured it out. I was in the hospital for 6 weeks and lost 35 pounds. Essentially I was left with a lot of nerve damage i.e. drop foot in both feet, loss of fine motor skills in my hands, loss of saliva, inability to cool myself off as I lost the ability to sweat. Some of my saliva, sweat have come back and my feet move a little but I must wear braces on my feet.

This is a rare manifestation of porphyria, but I thought I would throw it out there so people know it can show up like this.

This docs think it was a combo of stress and being on birth control that triggered it. Tweet