Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I tested positive for Porphyria (!?)

Sue, that's the first thing Lisa did was PM me about gettin on some heme meds. They sure would have been handy when I was sick in September - 2 nights in hospital, the all-in-my-head episode. Actually they agreed it was something when my hemoglobin dropped... hmm... we chalked it up to spherocytosis at that time. Wonder if it was porphyria. I bet getting treated properly would have helped in recovery time. Live and learn, I guess.

It still bugs me that there was one very arrogant doctor who was incredibly rude to me in the ER one of those nights - insisting over and over it was psychological and I needed a shrink. No joke. Would it be terrible if I tracked him down to have a word with him? Not anything angry, I'd be sure to keep it together, but I just wouldn't want this to happen to anyone else under his care again. I just think he should know, and to keep it in mind that not all patients who present with nonspecific symptoms and normal preliminary bloodwork are fabricating an illness.

We do med rounds and presentations at work all the time with docs, residents, and med students. Sometimes I'm tempted to keep my name out of it and just do a presentation on this past couple of years to some of the new med students.

Thanks! Honestly, I know some of this is not very good news, but I'm planning to ride the "yay! It's not in my head" wave for awhile yet!

Thanks Mary! I'm feeling the warm fuzzies.

Thanks Felicity! Yes, explains the really bad hair days. lol Unsure from what I read if it's the permanent or non permanent kind. Given it started 3 years ago... probably bad news, but whatever. As long as it's ON my head and not IN my head. lol Hugs to you!

Hey Gerri - that's crazy! I sure hope you don't have it, but if you did, it would sure be good to know! It's just such a relief to know what you're dealing with.

There are a few kinds of tests for it (from what I understand so far...) :
There is a blood test for the gene marker that causes porphyria. I haven't had that done.
Then there are a bunch of blood tests, and I'm not sure that I fully understand them 100%, so I won't even try. All I know is my ALA blood test didn't show anything abnormal.
My urine test for porphobilinogens was done a day after a really bad episode, so that was the test that was glaringly off the charts. I guess between porph flares, people can have normal urine tests, so maybe you're one of those people? Something to keep in mind. Oh, and my tests had to be sent to ottawa. Not exactly sure why.
Sounds like you have more questions than even I do.
Hope you can talk it over with your doc.

At least you HAVE a diagnosis. There is a feeling of relief when one's problem now has a name. Hope you find a great doctor to take care of you. (Haven't read all the thread yet....maybe you have one already) Enjoy the relief that 'it's not in your head'.

Thanks Mig!!! You're exactly right, it is a major relief just to know. I'm still holding onto the chance that this isn't too late to all be reversed too! Thanks for believing me.

Thanks Kat! They treat the neuropathy (my major issue) with gaba and morphine, and I was on this search in the first place to get off them. So, I'll just have to find a way to manage with the side effects of them. For acute attacks, there's a medication that needs to be given by IV immediately, and that's to prevent any further damage. So it's probably a case of learning how to live with it. Although we'll see if there's any improvement once I change my diet... keeping hopeful.

Thanks Chacha!!!

Thanks Kevin, yes please do tell Molly. Tell her she can PM me with all kinds of info from her digging sessions. hehe And please tell her I say bonjour!