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Waiting on Diagnosis

How long has everyone had to wait for a diagnosis?

I spent most of 2015 feeling run down and sick. I thought it was stress and didn't push things until in October during a trip my hands started aching constantly. I started dropping things and having trouble opening things.

I bounced between six specialists ruling out muscle disorders, carpal tunnel, and osteoarthritis before finally demanding a referral to a rheumatologist. Another month of xrays and tests and a round of prednisone later, it's 2016 and I finally get someone to acknowledge that there is an issue. It's June now and I still don't have a firm diagnosis beyond it's some form of Polyarthritis combined with Fibromyalgia. In July I have an appointment with yet another Rheumatologist, this time covered by my insurance, where I'm probably going to redo all the tests and Xrays.

Over all, I've been sick for a year and a half with no firm diagnosis. How long does it generally take?

  1. Hi agsides,

    Thanks so much for your post in our forums. We are sorry to hear it has taken a while for you to get a diagnosis. You certainly are not alone, as there are many community members that have shared a similar experience. Here are a few articles on diagnosis, that I thought would be helpful.

    "Getting a Definitive Diagnosis Can Be a Frustrating Process." https://rheumatoidarthritis.net/living/getting-definitive-diagnosis-can-frustrating-process/

    "Seronegative RA, the Piano Player, and a Delayed Diagnosis"https://rheumatoidarthritis.net/living/delayed-diagnosis/

    We hope that when you do see a rhuematologist this article is helpful: https://rheumatoidarthritis.net/living/what-to-expect-at-your-first-rheumatologist-appointment/

    Please come back and let us know how you are doing. Remember you are not alone and we are here for you!
    Thanks for being part of our community.
    Best,

    Lauren (Community Manager)

    1. I am an eight year colon cancer survivor and breast cancer survivor. I had chemotherapy for the colon cancer and radiation for the beast cancer. Since then, I've experienced chronic irritable bowel, fatigue, feet and hand numbness and asthma. In the past year I've been experiencing painful joint/muscle pain in my legs, shoulder, elbows and feet with low grade fevers that come and go. Primary physician mentioned RA and recommends I find a rheumatologist asap. I have horrible anxiety,panic attacks and fear of CT scans and an MRI. Can someone please tell me the exact testing involved in diagnosing RA. Thank you all in advance for your kindness.

      1. Hi SandyJetty! It sounds like you have survived a lot! There are a few different tests a physician uses to make a diagnosis of Rheumatoid Arthritis. This article covers the basics of diagnosing RA -- https://rheumatoidarthritis.net/diagnosis/. I hope this information helps offer you some reassurance. You are not alone! If you have further questions or concerns, please don't hesitate to reach out. We are happy to help in any way we can. Best, Erin, RheumatoidArthritis.net Team Member.

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