MoonBunny999's Journal

I had never heard of porphyria until 3 weeks ago, when my endocrinologist learned that I have a "sun allergy" and asked me about a zillion questions that didn't seem related to the reason I was there (PCOS).  After hearing my answers, he said that the symptoms I've mentioned sound a lot like porphyria, which is a pretty rare disorder.

This Friday, I am supposed to have a follow-up and we might see about getting me tested.  I don't know what I'm going to have to do (probably give blood), but if finding out some stuff can curtail my suffering, I'm all for it! 

Btw, I have tried the "home test" of peeing in a jar and setting it out in the sunlight, but had no luck.  My poop is often odd colors, though.

Wish me luck! :)