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Calling all other seronegatives

I am trying to s start my own little research project. I would love to hear from other seronegatives, especially regarding lab results, symptoms, treatments, and any seroconversions. Research is what I did before I retired, so this is a way for me to try to cope with this frustrating and painful disease. And if anyone knows of articles, especially from reputable journals, I'd appreciate the links. And thanks to all those who care to and can participate! . Nancy.

  1. Well, I am only officially sero-neg. RA on my diagnosis code from doc because she needed one right away. We are still in the process of figuring it out.......but.

    I have had big toe and knee pain for a few years. Figured osteo in knees and diagnosed hallux rigidux in big toes by foot guy. Got shoe inserts.

    Diagnosed with Raynauds in 2013, at age 47. All bloodwork came back neg. Diagnosed primary. Not auto-immune.

    Aug. 2017, started having severe hip pain. Left hip worse, but in both. Mostly on left side, shooting down thigh, but also groin on both sides. Toes and feet and knees in general progressively getting worse. Also have what seems like sciatica type pain down left back of leg into foot.

    Jan 2018, started elbow pain in both elbows, right worse, shooting down forearm. Couldn't lift my coffee cup at one point.

    Feb 2018, Chiropractor diagnosed tennis elbow. Took x-rays of hips, knees and elbows. Said they were normal, except for a tiny bit of narrowing in one knee joint, and 12 degree curve of spine.

    Rheum. appt. March 2017. Ultrasound of hip, diagnosed hip bursitis. Got a cort. injection in hip bursa and 3 down I T band. Bloodwork normal, said it is not inflammatory in nature. Ruled out RA. Said I have insomnia (don't EVEN get me started on that ridiculous statement) and prob. age related arthritis (but took no x-rays or did any more ultrasounds) and I feel it more b/c of lack of sleep. (7.5 hours a night)

    April 2nd opinion with new rheum. Did a thorough exam this time. And x-rays. Found bone erosions in my feet and hips. Started talking sero-neg. RA .....waiting on more bloodwork, since other doc. only did a few. She has me on a 15 day course of prednisone, to see if I respond to that, as kind of a test. If I respond well to it (and I seem to be) it's another piece of the puzzle, trying to figure things out.

    That's where I am now.....I am interested in this thread, too....since I am just starting this journey. But wanted to share my experience. It's frustrating b/c almost everything can be explained away by one doc. after another if they are only looking for the one thing and they don't dig at all. I kept saying, this is not me. Something is wrong. There has to be more here. It has taken awhile to find someone to start to figure it out, but I know it takes others much longer.

    1. I have only been recently diagnosed with RA and Sjögren’s Stndrome 4 months ago.. all blood tests were negative. Pain in both knees, elbows, wrists and occasionally ankles.. steroid injection worked GREAT for 1 1/2- 2 weeks.. mri of wrist negative.. wasn’t inflammed at time.. knees were.. went back in.. did ultrasound of knees.. swollen and inflammed.. steroid inj given in both knees because dr. Drew fluid out and said they were very inflammed.. fatigue.. chronic pain morning stiffness.. RA diagnosis given.. started methotrexate yesterday. Still not 100% convinced I have RA due to negative blood tests.. any thoughts? Rheumatologist stated 30-40% if Ltd have neg. lab tests. They only use them to track progression of disease.. UNSURE!!!

      1. I was seroneg, still am, but my diagnosis is no longer RA. Arthralgias presenting in major joints, wrists, shoulders, knees, feet. Not fingers or toes. After 2.5 years of immunosuppressants, I discover that I have pericarditis. Inflammation of the tissue surrounding the heart. Off to Mayo Clinic, and the RA docs said that it didn't add up. More testing, and they discover that I have Whipples disease. An extremely rare bacterial infection. Whipples can present as arthralgias, cardial diseases, digestive diseases, vision and central nervous system diseases. It is fatal left untreated, but curable, if diagnosed before severe damage. I'm looking at antibiotics for a couple of years, then essentially cured. So, serum negative, weird presentation of symptoms. Bad digestion or heart issue thrown in? Demand testing for Whipples. Standard test is biopsy from upper endoscopy. But Mayo is publishing paper soon on testing of synovial fluid from impacted joint. That is how mine was done. And the immunosuppressants were exactly what I did not need.

        1. Hi Beefybean. Sorry you had all these diagnostic issues, but glad you finally found some answers and that it looks like you are heading towards such a positive result. Thanks for sharing the information. Best, Richard ( Team)

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