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Diagnosis

Good morning. 9 years ago I went to my Dr. Due to swelling and horrible pain in my feet. I had abnormal blood work and was sent to rheumatologist. Determined I had RA markers buy they were more concerned with my thyroid. Diagnosed with Graves and Hashimotos and had my thyroid removed. Fast forward, I have gone to my rheumatologist a couple times due to the pain, stiffness, and swelling. Each time dismissed as some minor arthritis. This time I made an appointment, took three months to get in, he did an exam and lab work said he thinks we’re still looking at osteoarthritis. I have not slept the past two nights due to the stiffness in the pain. My blood work shows my anti-CCP is at 39. When I looked at bloodwork over the years this has significantly increased four years ago it was at 35. Now, it’s a continuing pain I am waiting for an ultrasound which they can’t get me in for two weeks, I emailed my doctor with some questions two days ago and still nothing. I am so frustrated, they make me feel like a hypochondriac and I’m ready to just give up and deal with it .

  1. I am so sorry you are dealing with these things. I wish I could offer better advice but I am afraid I do not have any. I just want to say I hope you feel supported in our community. Sometimes it is so difficult to just get the basic things like a diagnosis done................ rick

    1. Has your doctor considered sero-negative RA? Not all of us with RA show evidence on bloodwork. I'm a classic example.



      One lesson I've learned in the 30 years since my diagnosis: not all rheumatologists are created equal. Sometimes you've gotta' kiss a lot of frogs before you kiss a prince. Why not look for another one and book an appointment. It might take a while to get in but it might be a better match for you.

      1. I am not seeing your research. I have done quite a bit of research and based on my symptoms, I think I made a good decision to get a second opinion.

      2. Hmmmm...neither am I seeing my research. I'm reposting below.


        https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2881435/



        [In the study above] Based on the results of ROC analysis, a serum anti-CCP of 14.8 U/mL yielded the highest Youden's index value for diagnosis of RA at a sensitivity of 81.6%, a specificity of 87.5%, and overall accuracy rate of 84.6% (Figure 1). At this level the anti-CCP test demonstrated a false positive rate of 12.5%, a false negative rate of 18.4%, a misclassification rate of 15.4%

    2. Hi . Sorry you are struggling with pain and having these diagnostic issues. As noted, there are doctors who tend to go strictly by test result numbers. This article gives further insight into the anti-CCP: https://emedicine.medscape.com/article/2094136-overview. You'll note that it lists 39 as the top of the what they call weakly positive and your doctor may have simply used that as a reason to wait. I want to stress that this number may mean nothing about your pain levels and how you are feeling. In fact, as Drea also mentioned there is something called seronegative RA, where the numbers can appear normal, but the person has the symptoms and receives a diagnosis. Up to one third of all RA cases are seronegative. This article from our editorial team goes into more detail: https://rheumatoidarthritis.net/seronegative-diagnosis. You are always entitled to a second opinion and you may want to enquire on their thoughts on seronegative RA. Wishing you the best and please feel free, if you like, to keep us posted on how you are doing. Richard (RheumatoidArthritis.net Team)

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