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Feeling confused- Seronegative RA and New Rheumy

Have you ever been challenged about your RA when speaking with a new doctor? Has that ever made you feel so small and insignificant? I am feeling that way right now. I am feeling a flood of emotions. Back in December I found out that my rheumatologist was moving and I was being referred to a new doctor. To say I was devastated was an understatement. I had found Dr. H after being treated like my symptoms weren't real from a different doctor. Dr. H made me feel comfortable and never made me question myself or my issues. She gave me confidence to say exactly how I was feeling because I knew that she believed me.
After Dr. H moved, I saw Dr. K (two times and I was unhappy both times). I had told Dr. K that I could tell Rinvoq was working. It might not have gotten rid of all my little issues but it definitely is making a difference, I could tell! And instead of being happy that it was working, he was confused that I was still having "little issues". He suggested that having issues in only one joint at a time is not RA. He said I should go off all my medication so he could give me a "true diagnosis". I was shocked and dismayed that it felt like everything I was saying to him was just not valid. Stating that tendons and soft tissues are not affected by RA and that costochondritis also does not occur in patients with RA and that it doesn't help my situation that I am seronegative and have no inflammatory markers in my lab work. I became enraged! How could a rheumatologist not understand that RA is a systemic disease? Even though I was mad, I really felt sad and confused more than anything.

Friday I will be seeing a new rheumatologist, the one who has seen my mother for seronegative RA for over 20 years. And even though I know from her experience that he is a good, caring doctor, I am so nervous. I have never felt so confused about what my body experiences. After having a seronegative RA diagnosis for 7 years, for the first time I am questioning myself. I know I have morning stiffness, I get stiff sitting or lying down, and I know that most "normal" people don't experience pain in their jaw for several months at a time, I know "normal" people don't experience sternum pain so bad they can't get up, pain so bad that they can barely drive home, waking up every morning with swollen, hot, uncomfortable hands, the list goes on.

I am struggling mentally with the fact that I am once again going through the motions having to prove my symptoms to someone new. Of course my joint exams are looking good- its because the medication I am on is working and most importantly, just because they look and feel good one day does not mean that that is how it is on all days.
This has been weighing so heavily on my mind, I needed to get it out in the world to see if anyone can relate to this/ share their stories with doctors and how to overcome the mental struggle of feeling helpless and lost regarding your diagnosis?

  1. , Thank you so much for sharing your story. I can relate to some of your experience. It was a surprise when my 1st rheumatologist retired. When I saw her colleague afterwards, all I wanted was assurance that she would not want to change my current treatment plan. Like you, I am seronegative. Fortunately, the new rheumatologist was fine with keeping things as they were and making minor changes as necessary over the years.

    I would feel frustrated and frightened if I were asked to stop my medicine just to see how and where my disease flared up and got worse. That sounds horrible, although I suppose I do see how the theory of it might be helpful.

    Sounds nice that you will be able to see the same doctor who has helped your mother for so many years. I hope that your consultation doesn't feel like you are having to prove anything. You should be able to give your history of symptoms and treatments in your own words and let that carry weight in the plan for what to do next.

    I'm sorry that you are feeling a bit helpless and lost. It's often nerve-wracking to meet with a new doctor and not know what their preconceived ideas may be (if any).

    Just to let you know, I experience pain sometimes in single joints and my disease is under really good control. Right now, my right elbow has been hurting but not my left. I mentioned this to my rheumatologist and basically it was noted in my chart. The pain isn't to the point where I'm desperate for steroids or anything. Just something new I noticed and we should keep an eye on.

    You are not alone in experiencing minor fluctuations in pain, stiffness, or swelling. But it is important to try to treat the disease aggressively enough to reduce its systemic effect.

    I really hope that your appointment goes well. Please do share how it goes afterwards. Remember that we are here for you.

    Best, Lisa, RA Team Member

    1. I have never had to reprove RA with a rheumatologist. I do almost every time with my cardiologist but I tell her the same that I tell my endo when he compliments me on cholesterol. I say well lets get the cardiologist on the line and you can tell her I have great cholesterol. The usually shuts them up. So when my cardiologist says I question that you have RA, I say wonderful lets call the rheumy so we can give him the good news.

      Interestingly no one has ever made one of thsoe calls.

      May be next time you can say oh fantastic I know Dr? will be delighted. Lets call and give him/her the great news. Then start yelling

      I am Cured,
      I am Cured,
      I am Cured.

      You will likely not need to leave the practice. It ill likely leave you 😀


      1. Thank you for sharing your kind words and experience with me. The appointment went well- even though this new doctor doesn't talk much he did say everything I describe is consistent with RA (which he will also get to see in my file whenever they finally transfer the records over to him). He said that everything looks good and he doesn't want to change anything so long as its working.
        I felt a huge wave of relief hearing that. He wants to see me a lot more frequently than my old doctor did but hey, if that's the only thing we disagree on then who am I to complain? Ha!

        Besides that, I broke my arm last week as well which is why I wasn't able to post my update sooner. The break seems to have aggravated the RA to some degree because now I have a couple little flares. It's always something LOL

        1. Similar to your experience with the cardiologist, I saw a PCP for the first time who found out I had RA and asked me, "do you even experience joint pain?"
          I was baffled. I said, of course I do. That is why I was referred to a rheumatologist 8 YEARS ago and have continued to have to see one since then!
          He said the treatment seemed too aggressive for someone who looks "normal and healthy". Needless to say, I won't be seeing him again!

          I am very sorry that you have to go through that every time you visit those drs. It is extremely frustrating. Hopefully one day they will have a better understanding of your situation and just keep their thoughts on your RA to themselves.

          1. Thank you Drea for a thought that will help me too—unfortunately in my health care system, Dr.s are frequently 'gone' when you return for a follow up appointment, and you are simply assigned one you do not know anything about.
            I am so pleased for kelseyhaus that the appointment went well with her new Dr.

          2. , ugh! I am sorry you can't get a certain level of 'continuity of care' due to changing doctors. That's frustrating! Best, Erin, Team member.

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