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first appointment update

i was asked to share how my appointment today went + am feeling sort of conflicted. it wasn’t bad but it also wasn’t especially helpful. my positive test results are apparently very borderline/not enough to make a diagnosis from and my joints weren’t “visibly swollen” enough. he also said RA doesn’t present with spine/back pain which i have and that if it’s JIA/JRA i’m going to have a hard time getting a diagnosis now at 21 since adult rheumatologists look for signs of adult disease and not a progressed version of the childhood disease. he said he has ”low suspicion” of RA/inflammatory arthritis or lupus? and that i should try a different rheum with more experience w JIA.

  1. WHAT?!?!?!?!?!? He said that? Wow. I was not aware there was a subspecialty for the juvenile version. Turns out there is.
    But that said, those with JRA eventually become adults....and go to regular rheumatologists. [He doesn't exactly inspire confidence.]

    Here's what I would do: I'd make an appointment with a different rheumatologist. When you're on the phone with the office, explain that you have an undiagnosed condition that might be the juvenile form. Have them check with the doctor to make sure he treats adults with JRA. If the office says "oh the doctor treats all kinds" ask them to please double check.]
    You have to be disappointed. I'm sorry.

    1. And just to be clear - RA waxes and wanes. You can be swollen one day and not the next. He doesn't know this?????

  2. , I am sorry your appointment wasn't more productive. I know that has to be a bit of a letdown. I feel like Drea offered some good pointers. You may be "borderline" for a diagnosis, but to me (and keep in mind that I am not a doctor), that's like being "a little bit pregnant". You either have RA or you don't. There is even a (very real) form of RA called seronegative RA, which is when the bloodwork doesn't show elevated disease activity, but a person still has RA and RA symptoms. I don't want to muddy the waters with more suggestions here, but I want you to know that one doctor's opinion doesn't have to be the final say.

    I know the last thing you want to do when you are hurting is to have to keep doctor shopping or fighting for a diagnosis, but it's not unusual for that to happen when it comes to conditions like RA.

    Thank you for taking the time to update the community on your first appointment. I hope you are able to find another specialist quickly and that your next appointment is much more fruitful!

    Best, Erin, Team Member.

    1. Oh shoot, I was hopeful that you might have a more definitive outcome. Since you mention back pain, I wonder if your rheumatologist discussed Ankylosing Spondylitis? It is amazingly difficult to diagnose for certain and take an experienced Rheumatologist. I might look into a practice that looks after AS patients. It is just a thought. .................. rick

      1. He did mention Spondylitis. I wasn't sure about it, because my biggest pain areas are my knees, hips, and hands (back pain is secondary), but he did say it was worth looking into. I'm definitely going to see about finding another rheumatologist -- ideally one w/ experience with JIA? But I should look into AS as well.

      2. Here is the web site of one of sister communities that deals with AS.

    2. thanks for reaching back out with an update on your rheumatology visit.
      I am sorry your visit sounded very confusing.
      You also can be diagnosed with RA without testing positive for RA factor which is called seronegative. So that is also what was a little confusing from what you mentioned you're Dr. mentioned at your visit. I have also attached an article below written by our editorial staff for your review.
      From my experience with RA, the absence of significant swelling is not an indicator that someone doesn't have RA.
      Wow Soma! I can only imagine a certain level of disappointment with your visit. Did the rheumatologist you saw order additional blood work or make any sort of plan to follow you?
      Regardless, I don't want to bombard you with suggestions. I provided the above articles to help you to continue to educate yourself about RA. Most importantly take some time to digest the visit. Unfortunately, we all have had less than desirable visits with Drs. Full disclosure I am on my 6th rheumatologist. I've finally have found the right one for me. Don't give up!!!
      I can tell you are a fighter and an advocate for yourself, from your posts. However, I also can understand from experience the frustration and disappointment that can occur from Drs appointments that didn't go quite how I hoped they would or should have. All of these experiences are a lot and they can wear anyone down.
      Never let anyone, even medical professionals, dismiss your symptoms. The pain, discomfort and fatigue you feel are real.
      Just take some time, do something fun and pamper yourself a little. I do my best thinking and have fun riding on a swing in the park. After, you have a little fun, then compose yourself and think about what your next move will be. If that's getting a second opinion, getting copies of blood work for your review. Whatever it is just know this is your body, and no one knows it better than you. So take some time, research, digest, process and then make a plan for you next step.
      We are always here for you and will support you in whatever decisions you make. Just Keep Swimming..Lynn Marie, " Team Member"

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