I sooo know what you mean, ozz. I am 53, and having had this since childhood I can recognize the patterns from previous events.
I also have a fairly new GP, after my last one decided his sports cars and young women were so important that he only wants to work half days three days per week. It was impossible to get appointments or call backs. The one thing I did like about him was that when I did see him, he was very thorough and had no problem referring me for what I needed.
My new GP is still learning about spondylitis, and it frustrates me. I've been having bad hip pain for almost two months, then a sudden severe UTI with high fever (102), but it wasn't in my kidneys. I was nauseated, weak, and almost fainted several times. The fatigue was unbelievable. I also had abdominal pain. After he prescribed three different antibiotics, things finally calmed down, but I still have the hip pain, low grade fever, and this morning my right eye has got that old familiar "here we go again" feeling.
My GP had ordered a CT scan for suspected "chronic appendicitis" (huh?), which came back noting no abnormalities in my colon or appendix, BUT "severe degenerative arthritis in sacroiliac up to L5" (no, really? duh!) When my new GP read the report he said "Well, you do have severe arthritis in your lower spine.". It was probably good that our conversation was over the phone so that he didn't see my face. I said "Uh yeah, I've had it all my life. That is why I brought my records to you from my old rheumatologist in NC.", to which he replied "Well I've never heard of arthritis causing abdominal pain or these other problems." Argh!
Fortunately, I was scheduled for a colonoscopy screening with a new gastroenterologist, and I like him (so far). He can carry on a conversation about spondylitis. When I went for the screening and was running a low-grade temp, we casually discussed that it was from my spondylitis and not having had any nsaids in my system for several days to prepare for the screening. He seems to "get it". I go back to see him in a couple of weeks to discuss my results and options. I have found that many gastroenterologists are knowledgeable about spondylitis, and if I can't get a referral to a rheumatologist, he can hopefully help me with my autoimmune disorder needs.
Another day in the life of spondylitis! ;-) One day at a time.
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