Michelle,
Though I can't begin to imagine what you go through, I have read enough of your posts at kickas to know that this has been far from easy for you and you have overcome enormous challenges with admirable courage and strength.
One of the things I have learned is to never compare pain, emotional or physical. I would never say to someone, "Your stubbed toe is no big deal. Look at this other person with a broken hip." Pain is pain and it is always very real for the person who is experiencing it. A stubbed toe hurts, by golly and that needs to be acknowledged and never minimized.
That is not to say, however, that some people are not dealing with greater challenges than others. Of course they are! I'm just saying that what each individual deals with is that person's reality and their pain is never to be minimized.
In talking about symptoms of AS, it's important to remember, that the family of spondyloarthopathies includes several different diseases, each with unique diagnostic criteria and some with more than one set of possible diagnostic criteria. This situation can create a great deal of confusion even among qualified and competent medical professionals because even the medical profession is not in full agreement about how to diagnose AS and related autoimmune disease. That statement is not meant to denigrate the medical profession. Medicine is of its very nature an inexact and still evolving science and therefore does not have everything sorted out and neatly categorized. Doctors are doing their best to develop reliable diagnostic criteria, but they aren't there yet. Moreover, within the diagnostic criteria for a given disease, there is a range of symptoms which meet those criteria. Because of that, each individual's manifestation of a disease will be unique to that person. Toss is what Wendy said about the overlap between autoimmune diseases and you have a challeging situation indeed, both for doctors and patients.
As far as delays in getting proper treatment, I have seen four rheumies over the past four years and I'm still undiagnosed and still untreated. In fact, I feel as if the medical profession has tossed me out in the cold and left me without guidance or hope. One place I still have left to go to for guidance and hope is kickas. I treasure the help, encouragement, information, advice, support and friendship I have received at kickas. I would like kickas to be a place where I and everyone else is treated gently and respectfully so that all can receive theinformation and support they need.
The best to you,
Karen
Last edited by Karen_the_Mouse; 05/31/09 04:00 PM.
