Doubting my diagnosis - seronegative, no swelling
Hi all. I was diagnosed with inflammatory arthritis (thought to most likely be RA, though it could be psoriatic arthritis) back in the fall, after five years of joint pain and fatigue that kept getting written off as solely fibromyalgia. I struggle with doubts about my diagnosis, because I don't have typical swelling or redness, and I'm seronegative. X-rays and ultrasounds of my hands and ankle also did not show anything. What did come back as abnormal was my Vectra test, which showed moderate disease activity. I've read again and again that the Vectra test isn't supposed to be used as a diagnostic tool, but my doctor seemed to find this result very significant in diagnosing me, along with possible family history.
Since my diagnosis, I've been on sulfasalazine. After a month or so on this I did start to feel like I have significantly more energy and less pain, and I have been able to be more active. I'm still limited in what I can do because of the fatigue and pain, but the people around me have noticed a huge difference in my activity and general demeanor. But I worry all the time that because I don't have a lot of the classic symptoms I don't really have inflammatory arthritis and I was misdiagnosed, and this is all some kind of placebo effect. I do have anxiety, so that complicates things.
I guess what I'm wondering is if anyone has had similar experiences or doubts. Or even if anyone else was diagnosed partially using Vectra test results. My doctor is supposed to be one of the best so I am trying to trust her, and she does seem to know her stuff, but I just worry and I wish things were more clearcut. Thanks for any thoughts or insight you have to offer.
, hi and welcome! First off, I am so glad the medication is helping. Second, while there's something to be said for the placebo affect, but I doubt it could increase your energy and decrease your pain that much. Seronegative is a very real form of RA and it's just as serious as 'typical' RA. And Vectra tests still matter in the diagnostic process. Don't doubt that your pain and symptoms are just as real as valid as any other person with RA. Whether you're dealing with RA, PsA, or another autoimmune issue, what you are experiencing is real and deserves to be treated with the proper medications and care from a knowledgeable physician.
And, dealing with anxiety on top of chronic health issues, well, that just makes things even harder. It sounds like you're aware of what might trigger your anxiety and that's good. Do you feel like you may be feeling a little bit of Imposter Syndrome? Pardon me for explaining, but if you don't know that is, it's when a person feels like they don't belong in a certain group/job/situation because they don't truly have the condition (or skills, talent, etc) required to be identified with that group/job/situation. Does that make sense? I don't feel like I'm explaining it well. It tends to be more recognized as a person doubting their abilities as opposed to a medical diagnosis, but I wanted to mention it here, regardless.
It sounds like you have a great doctor that understands RA, so you can keep telling your anxiety that your diagnosis is real. It's accurate. And you have every right to have your pain and symptoms taken just as seriously as anyone else's.
I do hope you get some helpful comments from other community members, especially some of our seronegative RA members. I know they have faced an uphill battle at times to have their conditions taken seriously.
I hope you keep seeing improvements with sulfasalazine and please know you are welcome to ask any questions you might have about your diagnosis, treatment, or any other RA related concerns you might have.
Best, Erin, RheumatoidArthritis.net Team Member.thank you - didn’t know it had a name, “Imposter Syndrome.” Don’t care much about the name but the fact that that validates the experience. Thank you.
Hi
. I just want to reinforce the wonderful information from . Up to one third of RA cases are seronegative. They are very real and can be quite severe. For example: my wife, Kelly Mack (a contributor here), was diagnosed at two over 40 years ago with a very severe case (before modern treatments), has used a wheelchair much of her life, but is also seronegative. The diagnostic process can be extremely difficult, which may be part of the reason your doctor is using the term inflammatory arthritis. While your doctor may have referred to the Vectra DA test, there were probably a lot of other factors examined (see this article on the process: https://rheumatoidarthritis.net/diagnosis). As Erin said, sometimes the proof is in the pudding and the fact that you are feeling better speaks volumes. Your doctor may not be sure on the exact inflammatory condition, but seems to be treating to results and, trust me, a rheumatologist who focuses on how you feel, as opposed to just test results may be worth their weight in gold (which, incidentally, previously was used in liquid form as an RA treatment. My wife had the shots as kid - didn't do much). Your questions are certainly understandable and plenty of seronegative people have them, so don't hesitate to ask your doctor about what led to the conclusions and thoughts on treatment, maybe even towards improving the pain situation. Please don't hesitate, if you like, to keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net Team) I also have no swelling and am seronegative, but I definitely have RA. It has progressed over the past 12 years. I have severe pain in my hands, knees, and feet most days. My last blood test showed a positive ANA, and my doctor took a specialized test which was positive. I’ve had several Rheumatologists over the years who told me I had Fibromyalgia, and my current doctor was the first one to take me seriously. I’m on Orencia right now and it’s just starting to work. This is extremely helpful information for me as I am in the same situation. After reading this, I will honor the drs diagnosis and accept that it is possible to have RA and just be aware that it is still doing damage whether I am aware of it or not. Thank you for sharing. I wish you well. did you find your joints cracked a lot by any chance?
Hi
, I completely understand and am very much in the same situation. A few years ago I was diagnosed with seronegative RA also. I do not experience much of what others do, such as swelling, extreme pain and discomfort and warm joints. I do have damage of my hand and feet joints though. I have no answers for you but do want to say that I feel the same and am always still searching for answers. Wishing you and well and hoping you find the answers you need also. I think we need that in order to move forward.
