finally on the verge of a diagnosis
hello! i've been dealing with chronic pain and spinal issues for about 20yrs now. when i started experiencing a notable degeneration in my joints in 2020, i was referred to a rheumatologist who insisted there was nothing wrong with me-- naturally all of my labs and scans were normal, and he said he could prescribe celebrex if i "really want it." needless to say i didn't, and i was super discouraged. then earlier this year, after going through so many serious episodes and finally getting diagnosed with IBS-C, i felt ready to make an aggressive go at figuring out what has been going on with my body. and i found a new rheumatologist who is not only taking me seriously, but she is convinced that my symptoms are all telling of nr-axspa. honestly, i'm so excited to be told that it's not just all in my head or that "some people just live with pain" that i'm not sure what's going to happen if i actually get a formal, confirmed diagnosis. feeling a lot of emotions, and actually feeling pretty isolated. i've tried to explain this condition to my family and friends, and for the most part i've gotten two responses-- no one has ever heard of axspa, and people just feel sorry for me. my therapist suggested i find community support, and so here i am! this may be a silly question, but can anyone relate?
I can relate. 2 doctors, 2 surgeons, and 3 radiologists all indicted they saw the signs of AS (pelvis & sacrum fused). Finally saw a Rheumatologist, who spent an hour explaining why I couldn't possibly have AS, did not look at imaging. He did however, order a set of X-RAYS just to further "convince" me. His staff called me in a couple days saying the doctor wanted to see me as soon as possible. Apparently, I might actually have AS, as clearly seen on the X-RAYS. Saw his PA, who actually examined me and viewed all the imaging. Got on medications immediately, and life has improved. Decided to work with the PA from now on, they wanted to help their patients and don't have all the "Ego" in the way...
It's heartbreaking when I hear stories like this. Thanks for sharing your journey. Sending you thoughts of healing and well-being. So glad to hear you improved once diagnosed and are on a good treatment plan. Warmly, Rebecca (Team member) 
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Thank you for sharing a bit of your challenging journey.
I'm glad to hear you are headed in the right direction.
It sounds like you are in good hands now (finally).
Stay well, Doreen (Team Member)
thank you, rebecca!
Oh,
, you are not alone. Welcome to the spondyloarthritis site. The merry-go-round of emotions is expected when a diagnosis is given. I understand exactly where you are right now. Finally getting a diagnosis I was so relieved that I was giddy for months. I had answers and was so grateful bc I spent 2 decades looking for answers. I was in my 30s seeing the first rheumatologist who straight out stated "There's nothing wrong with you". From that day on I was on the path to convince myself (and others - family and friends) it was not all in my head. It was the biggest struggle I'd faced. For many years I was stuck on my merry-go-round in a cycle of emotions, unable to step off and find stability. With no help navigating these feelings and yearning for clarity or peace amidst the confusion, I turned to a community for support. In this community, I learned what this disease was all about, what to expect, and how to help myself, and ... I was set upon my journey toward better health and well-being being a bit more educated and assured. Most of all, I received the support I needed to keep moving forward. I hope you get a chance to read some of our members' articles offering their ventures. It's quite a learning experience. Here's a link to an article I wrote a bit ago. Hope it helps. https://axialspondyloarthritis.net/living/morning Please keep in touch. We are grateful you are here. Hugs. Rebecca (team member)
