If you have firsthand experience with and/or professional knowledge about Autoimmune Disorder or Related Disease, would you please share it?

As I’ve revealed elsewhere around the site, I have an Autoimmune Disease. However, like many with these conditions, it doesn’t fit neatly into a diagnostic box.

I’ve joined a bunch of RA and Autoimmune groups and forums, and one thing that is consistent across them all is how idiosyncratic the symptoms and responses to treatment people with these disorders experience. There’s new drugs coming out quite often, but that scares me too. I’m not fully trusting of the FDA and Pharma industry of the 21st century. I’m also frustrated because so many of my fellow sufferers are also unhappy with their rheumatologists, and I get the impression that there really isn’t a true medical speciality for Autoimmunity, which frightens and frustrates me.

I want more answers, but it appears that no one is actually qualified to get them for me. I’m a few miles away from a large medical school that has a Rheumatology and Autoimmune Department, but I can’t self-refer – other Drs. send their challenging cases there, it seems. I’m not that bad yet, but I don’t want to have to be disabled before I can find out what’s going on inside my own body.

I know that some of our collective are in the medical field, and that many others have some of these conditions. I wanted to start this post as a place to discuss these complex conditions. Check out the conditions on the list (http://en.m.wikipedia.org/wiki/Autoimmune_disease), do you or a loved on have one of those, and did you knew that it is an autoimmune condition, or suspected to be related? Please share your thoughts, experiences and knowledge on the topic. I’m hoping that even if I don’t get specific help, that someone will benefit from the information we share here. Thank you.