Louise! Oh... I wish you and hubby would really move to Canada now!
I'd love to pick both your brains on all sorts of things. I also have hereditary spherocytosis, Gilbert's (also hereditary in my fam), and now this. So many blood disorders for one little person - and all inherited from my mom, who inherited them from her mom.
I just told my mom about the porphyria and she said "Now where on earth would you get another rare thing like that?" "Umm... probably YOU." lol I had to explain it's yet another autosomal dominant disorder. She also passed her lovely AS gene onto me as well.
Honestly, my head is spinning with all the things I'm reading right now (med library, not general internet stuff). It sounds like acute intermittent porphyria as I have no sun sensitivity. That's actually the reason I wrote it off in my first few searches of possible causes. I didn't realize there was one form that didn't cause sun sensitivity.
And it really, really explains why my mom has so many of the same symptoms. She's had bouts of severe abdominal pain for years, without tests showing anything abnormal. I'm not a betting woman, but I know exactly where I'd put my money on this one.
Wow, I sure hope I don't end up crazy like King George III. I just read the story. That's just great. So if Glen tells me I'm acting crazy, maybe he's right? lol I don't think I've lost it just yet... but there's always hope. Ha!
