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2nd Rheum opinion and finally a clue

  • By mamadee

    So I ended up keeping my 2nd rheum. appt. to get a second opinion. I’m glad I did.

    She really listened, unlike the last guy. And seemed interested in finding out the why. I told her the last guy diagnosed hip bursitis and gave me an injection and a week’s worth of meds. Some bloodwork, but no x-rays.

    So we did x-rays. Hips, hands, and feet. I was expecting to find nothing. I was surprised. She said I had arthritis in my feet and hips. Hands were ok. I assumed osteo. She said she didn’t think so. She said there was bone erosion and….I don’t know….tiny holes or something??? Not sure about that part. Anyway, she suspects autoimmune! She said there is def. joint damage and we need to figure this out. She is running more detailed bloodwork. I asked what if it comes back ok. She explained the whole sero-negative RA thing. So for now, she wants to do a 15 day trial of prednisone…..to see if I respond to that. If so, that would be another piece of the puzzle, pointing to inflammatory.

    Thank goodness I went. I almost didn’t. I don’t feel so crazy after today. Actually something to show why I am hurting.

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  • By ktinflorida

    I’m sorry this looks like it may be the answer, but I’m glad you went too. At least you know SOMETHING is wrong and it isn’t just something you should tough it out.

    Let us know how the prednisone works for you. It sounds like you got a goid Rheumatologist this time. They make all the difference in the world.

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  • By Monica Y. Sengupta Moderator

    Yay!! I am glad you got a second opinion, mamadee. We are the only ones who know what’s wrong and can be our own advocates. I actually got a second opinion as well. I adore my new rheumatologist. He listens and immediately repsonds to my concerns.

    The first rheumy basically thought I was drug-seeking (I had only been on steroids for a sinus problem years before) and told me to come back in 6 months if I was “still in pain”. Two days later, I couldn’t get out of bed and we said “nope, this isn’t right” and sure enough, it wasn’t!

    All the best with this new doctor and together you find some relief soon! ~Monica (RheumatoidArthrtis.net Team)

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  • By mamadee

    Thanks. I don’t know a lot about sero neg. RA. Guess that’s something to learn about. It does make me feel a bit better about a sero neg diagnosis, if it does goes that way, knowing that x-rays point that direction, even if the bloodwork doesn’t.

    At the very least, even if it turns out not to be RA or auto immune at all, I will have confidence that we left no stone unturned. She seems committed to get to the bottom of things. It helps to know you can trust your doc…..I didn’t feel that way about the first guy.

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  • By CaseyH Moderator

    Hi mamadee,

    I just wanted to echo everyone else’s comments and commend you on your self-advocacy. I am SO glad you went to the second appointment, and although the results may not be what you were hoping for, I’m glad you found someone who is compassionate and going to work with you further to determine what’s going on. That is so great. Please keep us posted on everything. We’ll be thinking of you!!

    I also found two articles that talk about being seronegative and living with seronegative RA that I thought you may be interested in. You can find these here, https://rheumatoidarthritis.net/living/delayed-diagnosis/ and here https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/

    Thank you for taking the time to share with us!

    Casey (RheumatoidArthritis.net Team)

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  • By NPEOttawa

    I wonder if there are any data on seronegatives and treatment. I know it is treated the same as seropositive but in one of the articles CaseyH gave, the author said MTX did not work well, and it hasn’t for me either., nor has leflunamide added to the MTX. (Prednisone did but I can’t use that indefinitely.) So glad you have the new doctor mamadee. Hope the treatment works well for you and soon.

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  • By NPEOttawa

    I should have been more specific. I know it works very well for many. And it certainly helped me, but it didn’t do enough. (I estimated a reduction in pain of 50%.) And a course of a small amount of prednisone killed the inflammation. So I was prescribed leflunamide to go with the methotrexate for more pain reduction, and when the swelling came back, another course of a low dose of prednisone. And the diagnosis went from mild to mild-moderate. I now have been on methotrexate for 8 mths and leflunamide for 2, and pain has increased, there is swelling that comes and goes, many more joints are affected, one of my liver enzymes is high, and I’m afraid of the next appointment in a few weeks. My tale of woe.
    May I offer a bit of unasked for advice? Keep track of everything to do with your health now, but especially any treatment and its effects and any side effects. And I hope MTX works well for you if you are prescribed it.

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  • By mamadee

    Thank you, Ottawa.

    I’m sorry you are going through all of this.

    And yes, I am keeping track. The prednisone is a test, so I am writing down how I feel each day on it. You think you remember, but looking back at the last 5 days, I realized if I hadn’t written it down, I would have missed a lot!

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