Spondylitis Association of America
Posted By: rbassquez What Labs to request - 03/11/20 04:33 AM
Hello! I'm undiagnosed but feel relatively sure I have something autoimmune, and AS would make sense, but again, I'm still undiagnosed. I'm currently 41, had chronic lower back pain and left hip pain for the last 1-2 years (before that it was sporadic, but not as noticeable). After trying 8 weeks of physical therapy and no improvement (slight worsening), I recently had a lumbar and hip xray (radiologist mentioned mild spurring of L1 and L4) but the MRI (without contrast) of lumbar and hip came back normal. I'm supposed to follow up with my PCP next week but am wondering what labs to request.

In the past I've had lots of fertility issues - an ovary and Fallopian tube removed due to teratoma and then two failed in vitro attempts (hysteroscopy and biopsy revealed high killer cells in uterus, but unsure if that contributed to failed in vitros). Took levothyroxine for a year (2016) due to thyroid numbers all out of range, now it's back to "normal". In 2018 I had severe fatigue so my PCP ordered a Rheumatoid factor and ANA test which were both negative (turned out to be vitamin D deficiency). I've also had endometriosis and pelvic adhesions, mild IBS, and other joint issues like plantar fasciitis and osteoarthritis in shoulder/knees.

Right now I'm glad the MRI didn't show anything, but I'm feeling crazy....is this pain all in my head? Is it musculoskeletal or nerve related instead? Why do I have so much tension in my whole pelvic/piriformis region?

So besides the HLA-B27, what labs would you ask for? ESR (sedimentation rate) and CRP which would just show overall inflammation...not sure that would merit more imaging with the MRI being clean. TIA!!
Posted By: Winston Re: What Labs to request - 03/11/20 12:55 PM
Typically, when there's a suspicion of autoimmunity, a PCP would order CBC, ESR, CRP, RF, ANA, and possibly the HLA-B27 genetic test. Given you've already had negative results on the RF and ANA, I'd specifically ask for the HLA-B27 test. I'd also ask for a referral to a rheumatologist, but don't be surprised if it takes you six months or more to get in to see one. Have you tried a continuous course of NSAIDs to see if it reduces your symptoms? By that I mean, have you taken an NSAID (Aleve, Motrin, Celebrex, etc.) continuously for at least two weeks to see if your symptoms improve? If you haven't and you can take NSAIDs, you should try it, as that will usually provide doctors a clue as to whether your symptoms are inflammatory or not. (Note, I'm not a doctor or medical professional; just a professional patient speaking from my own experience.)

You are the correct age and gender for autoimmune issues to become more likely; so neither you nor your doctors should dismiss your symptoms as "all in your head."
Posted By: FayeK Re: What Labs to request - 03/11/20 01:30 PM
Welcome rbassquez!
I know the feeling that I must be crazy because I'm not getting answers or relief from my pains. I spent the better part of 10 years looking for answers. I knew all along that a part of this was systemic but could not find a doctor that would listen. Then my PCP unintentionally did me a favor by not following up with me on the results of a few blood tests I demanded he do. I finally found a good rheumatologist and was diagnosed with AS after more than 30 tests. My understanding is he did that many tests in order to rule out rather than diagnose. It's been a year since and am I pain free? - nope. That isn't the case for everyone. Don't give up. Consider asking your PCP for a referral to a rheumatologist or if it's an option find one on your own. Check the forum list https://forums.spondylitis.org/ubbthreads.php?ubb=postlist&Board=3&page=1
Best wishes.
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