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Finally found a doctor who is taking my various intermittent symptoms seriously (joint & muscle pain, dry eyes, burning nerve sensation), and my ANA came back positive, though at a borderline titer (it was negative 3 years ago though, and I'm male, early 30s). I see her in a couple weeks, and while I'm not jumping to conclusions (under the understanding that autoimmune issues are much more complex than a mildly-positive ANA), I am worried about the realities of management of rheumatoid arthritis or lupus or another autoimmune issue.
Wondering if anyone else here has any experience in this kind of territory and has any advice?
2 years ago I was diagnosed with ankylosing spondilitis, a rheumatologic autoimmune disease that slowly fuses my vertebrae in my lower back together, affecting my mobility. It was detected through referal to an ophtalmologist and then rheumatologist from an optometrist who found it weird that I would have an uveitis (intra occular inflamation) out of the blue at my age (mid 30s) for no discernable reason and asked a few question about back pain (most important factor in this was that the back pain would increase at rest and decrease in movement).
Have you been tested for the gene HLA-B27? Assuming that comes back positive, with the mildly positive ANA and the inflammation symptoms, the conclusion is pretty clear.
If you are diagnosed for an rheumatologic autoimmune disease, I'd say expect to have a lot of little issues that will make more sense. From what I understand if you are diagnosed with one of the autoimmune diseases correlated with the HLA-B27 gene, you probably have symptoms from many of them, although sometimes at below diagnostic levels. I've struggled with frequent heartburn that I could not explain as reflux, makes a lot more sense if my esophagous is just prone to inflammation. Do you have random bouts of diarrhea? IBD is in that category, maybe you don't quite reach the criteria for diagnostic, but don't be too surprised. It can help guide doctors too in the future when you have issues; doctors tend to see inflammation as a symptom of another issue and will expect that if they find and treat that other issue the inflammation will go away, and that would be correct for most of the population, but with an autoimmune disease the inflammation could very well have happened for no reason than you body hating you that day, and should be treated directly (usually with cortisone). Skin inflammation (psoriasis or dermatitis) that doctors failed to treat when they assumed it was bacterial or fungal in origin? Makes a lot more sense when you know your body is prone to autoimmune inflammation for no underlying reason.
As I'm sure you're aware, these conditions are not considered curable right now, but on the upside, NSAIDs have been working very well for me, both ibuprofen and slow-release prescription diclofenac. If I feel I'm in an inflammatory period, one ibuprofen before bed is enough to avoid waking up in the middle of the night with pain and a stiff back. You mention dry eyes: watch out for uveitis as that is the symptom with the biggest impact on my life and it can cause long term damage to your vision. I'm currently in the middle of a long course of corticosteroid drops after an acute uveitis (the kind that had the optometrist and ophtalmologist talk in a very serious and worried tone) and I'm worried I could come out on the other side of it with significant vision loss in the affected eye. If you have eye irritation that seems to come from inside the eye that lubricating drops (get good ones, they can help a lot with the dryness) are not controlling, quickly go see an ophtalmologist, or if you can't see one like that directly, an optometrist for an "ocular emergency" (many optometrists offer emergency consultations). Skip the generalist. The generalist I initially saw for my first uveitis was clueless, he diagnosed me with a bacterial conjunctivitis and prescribed me antibiotic drops which made my issue worse. They simply are not equipped (in both knowledge and actual medical equipment) to diagnose eye issues.
Thank you! This is really helpful.
So my update here is that a stool test came back with extremely low pancreatic elastaze 1 level (31) and a high amount of Klebsiella oxytosa, which is fairly correlated with ankolyzing spondylitis. Next steps are to essentially rule out some bad stuff like pancreatic cancer and chronic pancreatitis with an ultrasound or CAT scan and simultaneously treat the klebsiella and what looks like SIBO. Doc is checking HLA-B27, amylase and lipase, rheumatoid factor too, so I should have some answers soon.
I’m glad I found a doc to take my symptoms seriously, no one else would’ve ever detected that my exogenous pancreatic function was cratered. Most doctors make it clear they either don’t care or that trying to deal with chronic issues is like witchcraft. I feel like I was living with mild symptoms for years and all of a sudden they’re much larger, and if docs cared to take me seriously back then I wouldn’t be in this situation. I worry I’m about to cross the rubicon into chronic illness or serious acute illness and I just want to feel like I have agency to fix things.
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