Thank you for the replies. I have had this mess since childhood (8), and it started with waking up in the middle of the night with severe leg pain. As I grew, it began to manifest in other ways; severe morning stiffness, eye inflammation, fatigue, dizzy spells w/fainting, nosebleeds, inflamed glands, etc. I began to hear the term "non-diagnostic" over and over and over, by whichever doctor my parents happened to take me to for each specific symptom. Most often things were attributed to "growing pains", allergies, or that I was making it up. I finally just stopped talking about it and tolerated the pain.
It was finally discovered at age 30 that my sacroiliac joints were fused, and now up to my L5. I have had bad episodes with my hips, knees, and ankles, with severe swelling and very high sed rates. I have arthritis with some fusing in both shoulders, with anamolous ribs where first ribs meet the clavicle, and exotosis in numerous areas. I have had peptic ulcer disease several times, pancreatitis, and an ulcerative colon, all coming back with biopsies saying "non-diagnostic". This inflammatory crud has also affected other internal organs. I work hard, exercise as much as I can, and try to eat right. It is so frustrating to have something that is so widespread in my body, so unpredictable, and also so individualized and misunderstood by the medical community. Sometimes I feel as though there is an attitude out there that says "Well, it's probably not going to kill you, and it's not contagious, so there's no reason to put much effort into finding ways to prevent it." <sigh>
Anyway, I am hla-b27 negative and female. I came to this website several years ago looking for others struggling with this goo, but when I saw how much emphasis there was on cervical fusion and the male factor, I didn't stick around. Now I am happy to see that it is much more inclusive of females and other symptoms.
I think it would be a good thing to use terminology that is more across-the-board and referring to the pain of enthesitis, fusion of the sacroiliac joints, potential for other bone growth and fusion, and the potential for other organ inflammation. These are the things we ALL seem to have in common.
Last edited by NorthCentralFL; 06/08/13 12:41 PM.