I have never heard of AIP, but just looked it up. I wished I could help. Good luck on your search and hopefully someone here has more information.
Hugs, Cathy

well I did some reading on it, they do have a spot in the rare disease archive along with a national institue. Have you looked at the mayo clinic, they usually have a pretty good coverage of stuff that is more understandable.
I didn't come arcross any blogs, the only other thing I can think of is to tackle it from a reasearch angle, and see what reasearchers have been playing with, you can ususally get to those paper by going thru the medical school archives.

Thx Cathy & babysnuggs. I have been to the porphyria site, mayo, but only a few med sites. Had done some vague research about a year ago because a long H stay for my youngest son, which he is still suspected for porphyria, it seems to be harder than finding a needle in a haystack! Thx, I'll keep plugging that research! MeLisa

I couldn't think of the research thing I was trying to think of last night, so I am going to try again because it may be helpful to you. Colleges have extensive archive of of peer review journals that have been written about research by others and research they have done.
I took a developmentsl psych class two semesters ago and we had to do a paper with peer reviewed journals and stuff. To be able to access the stuff that I was able to access through the college would hav cost me a subscribtion.
I know this because I tried to access them on my own for fun, cuz I'm a nerd that way and I could spend days reading, anyway, so my thought was to maybe find out if you can get access to one of the colleges or med schools. Where I live you don't have to be an actual student, you do however have to go to the college and register you name and social and stuff to have that kind of access to their resources. Okay, my brain seems to have worked a little better tonight, I was up late when I wrote that anyway, maybe that will help you out. good luck

Just curious. Did they do a biopsy to validate the diagnoses? Pseudo porphyria is often found in individuals who are on liver toxic medications. Try John Hopkins for info.

alright, I promise you I am not stalker material. out of boredom I decided to run AIP through EBSCO host from the college I attend. I found 82 Scholarly (Peer Reviewed) Journals. That peer reviewed thing basically means that these articles are well documented from actual case studies that have been done and have been reviewed by the AMA and other associations depending on the type of article you are looking up. There were more articles but I narrowed it down to peer review because that is where you can be sure its accurate information. I narrowed it down to full txt by pdf files to. Its not any good if you can't read the dang thing. So, if you give me a more specific question other than anyone who knows anything I will look it up and see what I can find. I can narrow those 82 articles so I wouldn't have to sort through them all or anything. I did a brief scan, and hear is what I saw, mind you I didn't actually read any one article yet. Liver transpants, sweden has done at least one case study with a fifteen year follow up on carcinomas' in patients with AIP, more case studies from other places and sweeden one dealing with sex hormones in women. kindred and genetic studies, and at least two case studies of women that look pretty general as in their life story documented. okie dokie then. Now I am gonna go try MG

Dredging ton, no biopsy, It seems the guru of docs on this is in Galvaston,Tx along w/ his very specific lab for porphyria.

Babysnuggs, thx for your work, I did find a DS group but as you said it is true, hard to find them let alone any current postings. I did get a good just of the porphyria chase by some other "porphyrians" ha sounds like "furion" from the movie Chronicles of Riddick, anyway, main question is can you really actually have MG & Porphyria? I ask that probably more out of shock & hope my urine test was wrong twice, that is possible! Thx again hugs MeLisa

Hi there,

I am sorry to hear about this medical battle that you are going through.

I have Acute Intermittent Porphyria and Myasthenia Gravis and I would be happy to answer any questions or help in any way possible.

Hope you are well and possibly already on your road to recovery and already have the answers that you need. If not I am here to answer any questions.