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Long road to diagnosis

I am 90% certain I have RA, but haven’t been diagnosed yet. I saw one Rheumatologist for 6 months before I was told there was nothing they could do for me. Fortunately, my family doctor is in my corner and agrees that it is RA. I have had many tests and she said I do test positive for an immune disease, but the test doesn’t pinpoint which one. I’m unable to get in to see another Rheumatologist until Jan 2022. I feel like my symptoms worsen by the day. Has anyone else had difficulty getting diagnosed and how do you deal with all the waiting??

  1. Oh my! Where are you that it takes that long? I've heard of waiting 3 months, but that's for the really, really good ones.
    There are some more specific tests, but even still, you might be sero-negative.
    Call the rheumatologist's office every other day, shortly after they open. Explain that you are really having a very bad time and a 6 month wait is unconscionable. Perhaps the practice has a Physician's Assistant who can see you sooner, just to get you in the door?
    Is going to a major city where there are more rheumatologists, or a medical center, an option?

    1. , gave you a good perspective here. You may already be aware, but here is more information on seronegative RA that may be of interest (https://rheumatoidarthritis.net/seronegative-diagnosis) - hope this helps! - Reggie, RheumatoidArthritis.net Team Member


  2. I agree with Drea. I always think there are two ways to shortcut a line like this. The first might be to ask your doctor to call the rheumatologist directly. Doing that can sometimes help a person get one of those special fill-in appointments. The second would be to locate a major medical center nearby and seek out a large rheumatology practice.
    rick

    1. I am so sorry the waiting is so long. Just know that we are here for support. There are several others that have shared the experience of waiting. like this https://rheumatoidarthritis.net/stories/still-waiting-for-diagnosis I hope the tips and knowing you are not alone will help. Sending positive thoughts.

      1. Thank you all for the support. I have done all of your suggestions and this doctor is said to be quite good. He is in the Hershey, PA Penn State medical center. Since I tried to short cut before and got a terrible doctor, I’m willing to wait. I am fortunate to have family and friends that are supportive. Sometimes it just wears you down and you want to talk to people that really understand.

        1. That's great! It sounds like you are doing everything in your power. I hope that your new doctor is great and a good fit for you. I understand about sometimes just wanting to talk with people who get it. Totally normal - that's what we are here for! - Reggie, RheumatoidArthritis.net Team Member

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