Oh, I am sorry. That is certainly not the clear answers you were hoping for. I know that can be very difficult and so frustrating. And all the contadictions... it makes you feel crazy, doesn't it. It is so hard to find someone who will make you feel heard and valued.

I do know many people without the gene marker who are still diagnosed with axspa or AS, so it's not the whole picture... although some Dr's treat it as such.

What are you thinking your next steps will be? If you do the meds and keep a diary, that may be a good first step. I can also suggest trying foam rolling, an acupressure mat, stretching, dry brushing, yoga nidra, physical therapy, and supplements. These are all things I use that bring some relief.
Please keep believing it can get better from here.

I believe that the lessened severity of my symptoms is a direct result of my own intervention and fighting for treatment from a chiropractor, acupuncturist, and massage therapist, as well as my own "experiments" with strengthening exercises, herbal therapies, heat, Epsom salt baths, etc. I have a list of 24 things I've tried to date to mitigate my symptoms, most of them outside of what's considered "traditional healthcare."

What makes me *really* angry, is that he's willing to try a drug therapy BEFORE making any diagnosis. Shouldn't you diagnose a patient first?! It can be very dangerous to prescribe medications without any diagnosis in mind. He's prescribed a dose of 15mg, which is the highest allowed. He didn't advise starting at a lower dose and wants me to take the maximum dose every day. That said, regular 'ol ibuprofen still works for me *most* of the time, and I take it judiciously (ie: only when I absolutely need it), so why would I want to take something stronger and take it all the time? He didn't seem to show any concern over what impact it may have on my benign essential hypertension either. Even the literature on the drug says to use it with caution with the lowest effective dosage for the shortest duration, so it's not even feasible as a long-term solution.

He also said there was nothing on my imaging, but an X-ray back in 2018 indicated osteoarthritis in my lower back and the suggestion of a unilateral L5 pars defect. Of course, no one's been monitoring that! Also, I recently had X-rays of my knees which showed subtle subchondral sclerosis along the central trochlear groove on both knees. I wouldn't say that's equivalent to "nothing" on imaging, he's just decided to view it as "not significant." In other words, it has to be severe before he'll make a diagnosis, but early diagnosis (for any condition) leads to far better outcomes generally. I don't understand the resistance to making a diagnosis when my GP was ready to diagnose Fybromyalgia before she'd even physically examined me in person. 🙄 It's shocking to me that they won't even admit there's arthritis when there's already been a diagnosis for that in my chart. It's some serious gas-lighting!!!

My alternative practitioners have all been very supportive and are much better at listening. I would highly recommend experimenting with alternative therapies! At this point, I'm ready to stick with them and avoid the regular MDs who don't seem to be interested because I'm still mobile, and quality of life be damned!

It's been 8 years, so I hope I only have to wait 4 more days to get somewhere more productive. I don't know what else to do, since I haven't been able to work (can't sit all day in front of a computer!). It doesn't make sense, but they can't seem to see the forest for the trees. It's almost as if they want to come to a diagnosis on their own, and I totally get that, but I've given them 8+ years and they haven't come up with anything, so...🤷‍♀️

Hi again...I had my doctor's appointment today and the new doctor is sending me back to rheumatology (different rheumatologist). The new doctor doesn't think it's Nr-AsSpA, but she's not a rheumatologist, so taking that with a grain of salt since she was super hung-up on blood markers and really wasn't listening to my SYMPTOMS. (*rolls eyes*) I asked if we could order labs for the HLA-B27 but she said, "No, because you didn't have any other markers, and we don't test for it if you don't show any others." This didn't make a whole lot of sense, since markers aren't always present even if HLA-B27 is and while it's not a definitive slam dunk diagnosis-wise, it's a hell of a lot closer. Why not just check it?!!!

I was able to get a rheumatology appointment for this Friday, so I'm curious if this one will have any greater intellectual curiosity than the last one (feeling cautiously optimistic). The big downside is going to be the long drive - 2 hours each way. I get my healthcare through the VA, so since I already saw an "in VA" rheumatologist, they won't let me go outside "the system" to a rheumatologist closer to home. Obvs I'll be pissed if it's just the same old song and dance. I'm going to request the HLA-B27 again with him. Maybe he'll be more open to it.

At the end of today's visit, she said if the rheumatologist doesn't come up with something different, she'd diagnose fibromyalgia. I don't think it's a good fit, since I don't have "generalized pain" all over my body. My pain has always been centralized to my lower back and in recent years, to my upper back. I'm also not depressed, at least not yet! I'm actually more likely to need anger management at this stage!!! I think there's a failure so far for anyone to really look at my longer-term history and the fact that I was already suffering in my early 20s. Just because I was able to employ mitigation strategies that effectively kept me going doesn't mean I wasn't suffering - I just wasn't complaining. Now it's just a lot worse than it's ever been, which is the only reason I've been trying to get some help for the past 8 years, but so far, no help, at least not in getting any diagnosis, much less a correct one and I'm losing confidence that it will even be possible at this point.

Thank you so much, Mimi10 for your response! I've been seeing a chiropractor since I was in my 20s and I currently see an acupuncturist and a massage therapist as well. I recently purchased a massage chair with heat to help take the edge off between visits to my therapist. I also experiment with herbal therapies and CBD (both tinctures and topicals). I am a former chef, so I eat really healthy and cook 100% of my meals from scratch. Sometimes I have to batch things or freeze meals because on my bad days, well, I just can't! I feel a lot better when I'm doing things, but there seems to be a line I sometimes cross into "over-doing" and then I sometimes flare but other times I won't. The most frustrating thing is not knowing how far I can push myself and when rest would be beneficial and when it's not. I hate that I wake up stiff and in pain when I should be rested and ready to go. Besides the above therapies, I've also tried a hip brace, a back brace, and swimming. The self-advocating is getting really hard after doing it for 8+ years. I recently saw a rheumatologist who said maybe it was "Post-Traumitic Dystonia" which doesn't describe what I'm experiencing at all, except for the muscle stiffness. I'm meeting with another new primary care doctor on Monday who I hope will have a more open approach to getting me diagnosed. I feel like I'm doing everything that I can on my end but I'm being failed by a medical system that sees me as an otherwise healthy person. Just because I don't look sick doesn't mean I'm well. Frankly, the aggregation they cause also seems to exacerbate my symptoms, especially if I'm already flaring, but stress isn't good for anything that ails anyone! I'll keep hammering away and hope that I get there eventually. I'll definitely ask on Monday if they can test for the hla b27 marker since for all the blood they've taken, they've never tested for that. Thanks again for your response and all the suggestions!!!