hi collin,
i am also hla-b27 negative and the last rheumy could find no proof or evidence of arthritis either. but the physiatrists and orthos all felt i had an arthritis and so are the ones who sent me there. do i have AS? arthritis? an autoimmune disease? don't know right now. maybe i do, maybe i don't.
i'll tell you, when i first read about spondyloarthropathy, i really felt i had found "it", the explanation to all my mysterious tendon and SI problems. i came here and was even more convinced. and i certainly haven't ruled it out....
but, playing devil's advocate, "what if its not AS, or even a spondy, or even an arthritis, or even autoimmune?" if i insist it is, then i miss the opportunity to dig deeper, so i turned to asking, "well, what else could it be?" i've pleaded with the doctors that have told me its not X and has turned me away, "please give me some other ideas of what then could be causing this, please." but unfortunately for now, i have not found a doctor that can do this / will do this. with the doctors being so strapped for time, it may be simply that they don't have the time or energy to think about complex cases. so doing a differential diagnosis is just beyond what can be done these days. but i also know there are other doctors out there who do think like this. who are well aware of diseases that mimic others.
so i am still on my "what else could it be" quest and seeing an endocrinologist. he ordered a bunch of blood work and i see him tomorrow to see what he says. from the bloodwork, i do not have diabetes but am prediabetic. i do not have an obvious thyroid problem but some of my numbers are borderline. could any of this be causing my problems?
for those of us in "diagnosis mystery world", i think it is best to explore all avenues. i haven't forgotten about the spondy and am scheduled to see another rheumatologist that comes highly recommended. and in the meantime i am exploring the endocrine path as well. if doctors haven't been able to figure it out in 10 years, then i know its not a simple diagnosis, and i know i can't figure it out myself and need the help of doctors willing to help me. we may not know what we have, but we know its something and isn't normal. there has to be an explanation.
so keep digging, explore all avenues, and as you suggest, do all you can do to control the symptoms. i wouldn't have been functional for 10 years if i didn't work very hard (on my own and with doctors and PTs) to get the symptoms under control. i think the best way to control symptoms is to figure out what is wrong and treat that. but a way that does work to an extent is to find out what helps and just do it, as you suggest.
all of us in "undiagnosed land" will get it figured out, just later rather than sooner for some.
sorry to hear about your frustrations,
sue
