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Calling all other seronegatives

  • By NPEOttawa

    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.

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  • By mamadee

    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.

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  • By k4rand

    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!!!

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  • By Beefybean

    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.

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  • By Richard Faust Moderator

    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 (RheumatoidArthritis.net Team)

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  • By shelly0624

    I’m 61. I was diagnosed seronegative a few months ago and I have no idea what is happening to the fingers on my hand. My finger was a little stiff but 9 months ago I could play guitar. (I write songs). My left middle finger is now painful, swollen to 3X it’s size, and always hot. I can hardly bend it and the thumb on my right hand is swollen 2X it’s size and I can hardly bend it either. MRI showed inflammation but two cortisone shots, sulfasalazine, Plaquenil, and methatrexate, have done nothing at all. It fact it’s worse. I’m supposed to take prednisone but it feels like I’m going to have a heart attack when I do. The doctor says I have both Osteo and seronegative RA. I’m wondering if that finger joint should be aspirated. I’ve been to two doctors. Both said it wouldn’t help anything but if the medicine doesn’t help, is it something else? Does an orthopedic surgeon or a rheumatologist do that procedure? Does diet help? I’m so sad that I can’t play guitar. It was my “thing”.

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  • By Whiskersvtwin

    I understand how you feel about your guitar. I had to give up the guitar, viola, and riding my motorcycle. Hopefully, you’ll get some relief. Although not easy, I’ve learned to look at other things for enjoyment. I rebuilt my amateur radio station, I’m going to try and work in the greenhouse this spring, and hopefully, take some horse riding lessons this year. It’s hard to lose things in our lives that bring us peace, but we still have some options. Maybe you could write music and share your experiences with others who play. Good luck to you and best wishes for pain-free days.

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  • By shelly0624

    You sound like an active and creative person. I actually wrote a book while losing this thing I love. It was one I started and never finished. It’s a fantasy for 6th grade to 9th, around that age. I’m going to try to paint the cover and start some sketches. I’m hoping my thumb isn’t going to be an obstacle. I do pen and ink drawings too but haven’t tried to do art, so we’ll see. There were songs that went with the story. It might turn into an audio book. (Energetic project, I know). We have some recording gear. I might try to learn keyboard.. One thing I am very thankful for, I haven’t had pain or restrictions in my knees. In my toes, yes, but my husband and I can still hike the forest trails. Horses are a great idea for you. I used to ride. It’s sensory and relaxing; a great way to enjoy the outdoors. Something about being outside that makes you feel like you are not so confined by boundaries. It renews you. I’m going to see if a doctor actually aspirates finger joints. I want it sent to a lab and I want the swelling and pressure to be relieved.

    Good luck on your radio project. That sounds like fun! My husband I use to go to “Imagination Theater” recording sessions (open to the public) and watch the the characters “voice act” and also watch the way they made sound effects. So interesting. Andy and I were huge radio drama fans.

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  • By shelly0624

    Does anyone know if coffee makes it worse? I drink a lot of that..

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  • By Jo J

    Not sure I’m willing to give up my morning cuppa to find out… Taking a fresh cup on my commute to the couch to finish waking up has become my morning routine…

    Seriously, a quick web search seems to show the science is still out – there may be positive benefits to moderate intake &/or negative effects to high intake??? Personally, because restorative sleep is an issue for me, I do limit my intake to early in the day. At one point, one of my meds caused significant GERD (among other side effects) and I noticed I just couldn’t enjoy my coffee with bad heartburn. Since changing meds, it’s no longer a problem.

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  • By shelly0624

    My doctor put me on omeprazole for the same reason. I put a pinch of baking soda in the coffee basket when I make pot. Just a pinch. Any more than that and you can taste it. If you still taste it, try less. It helps a lot to lessen the acid.. I drink too much coffee. It’s like rocket fuel to get me through the day 🙂

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  • By shelly0624

    My fingers are rapidly getting worse and much more painful. It hurts to do anything. The third finger is bending more and more to the left. Has anyone ever gone to an orthopedic surgeon or hand doctor. If so, does it help?

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    • By Richard Faust Moderator

      Hi Shelly0624. Sorry you are having these hand issues. I can’t speak to whether an orthopedist may be able to help, but we do have this article from our editorial team on hand and wrist surgery: https://rheumatoidarthritis.net/surgery/hand-and-wrist-surgery/. Hopefully, your doctor can provide additional information and recommendations. Wishing you some relief soon. Best, Richard (RheumatoidArthritis.net Team)

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  • By Shoe

    New to this forum. Did anyone start off with ball of foot pain? The balls of my feet (both) have been painful for four months now. X-ray/MRI of feet show nothing. My RA factor test result came back with a 40. I am sixty years of age, and spent 23 years in the Army on tanks, after that I worked in a distribution center inside huge freezers with concrete floors for fifteen years. I have recently been having pins and needles sensations in hands and feet. My feet only hurt when I do anything weight bearing. Sitting or laying down there is not real pain. I shattered my wrist years ago, and would think that if I was going to get arthritis, that it would start there. My grandmother died at the age of forty eight, and supposedly it was from complications of RA, my father died of terminal bone cancer at fifty two. Up until a few months ago I was an active runner, and could walk up to six miles without breaking a sweat, now it is a chore just walking the dog around the block. I have a rheumatologist appointment in May, and am currently doing PT to help with the problem. I had been prescribed Gabapentin to help with the pain/pins and needles, but could not tolerate this drug, so have fell back on Elavil, no results yet. I am usually an active person, and now being inactive has really sent me into a depressive nose-dive. The mind is a strange thing, and it’s like the (my) world as I know it will never be the same. I have lost interest in so much during this short span of time. I believe I know what my diagnosis is going to be. I read a lot of these comments on here, and am encouraged and doubtful at the same time. I really have never had a lot of experiences having to deal with pain issues….but I fear my time has come. I was always told that exercising, working out, going to the gym, and all that good Hooah would add years to my life, but no one ever told me that there would be a price to pay for these added years. Somebody lied to me…oh well misery loves company they say. Thanks for letting me vent.

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    • By aja1

      Hi

      I started with pain in my feet- ankles to be precise. My RF is normal. i am being treated as it its inflammatory arthritis without a firm diagnosis of RA – yet. My xrays and mri do reveal a lot and I’m now getting pain in my hands, knees and shoulders (regardless of activity) which led them to start treatment. It took nearly 3 years to get this far though. Everyone is different and it’s good you’re being seen by rheumy. I hope it brings you some answers and some relief.

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    • By Richard Faust Moderator

      Hi Shoe. No worries about venting. Trying to get a proper diagnosis can be frustrating, not to even mention the physical issues. I can’t speak to RA starting in the balls of the feet, but I’ve certainly heard of many places being points of origination. More to the point is your rheumatoid factor being 40. Anything over 15 is considered high. Have you seen a rheumatologist yet? Also, has your doctor or rheumatologist suggested any course of action/treatment? The sooner treatment is started the better the chances of fending off permanent damage. This article from our editorial team gives an overview of the diagnostic process: https://rheumatoidarthritis.net/diagnosis/. Know that this community is here for you for information and support. Feel free to let us know how you are doing. Best, Richard (RheumatoidArthritis.net Team)

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  • By Lawrence 'rick' Phillips Moderator

    I am sorry you are in such a difficult place. To your first question I did not start with pain in feet as an impetuous for RA. I do not recall hearing others suggest it started for them in that area either. I imagine others might have other experiences.

    I do hope when you see a Rheumatologist they will be able to give a proper diagnosis. I also see a podiatrist routinely for Plantar Fasciitis and foot joint issues.

    I wish you the very best.

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