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Misdiagnosis

Far too often, it takes years between symptom onset and receiving an accurate lupus diagnosis. When did your symptoms begin versus when you received your diagnosis? Was anyone here initially misdiagnosed?

  1. I was diagnosed with rheumatoid arthritis 1974 but it took me many years, until 1991 that l discoved what l have. It was while l was reading an old magazine in the waiting room. I was, yet again, in another doctor's office waiting for my appointment to know what was wrong with my body.


    1. We appreciate you sharing your story. So many in this community can relate to your lengthy and unyielding experience. How are things going today?
      ~Doreen (Team Member)

    2. such a long tedious process getting proper diagnosis. Thanks for sharing ~Racquel~ lupus.net team member


  2. I was first diagnosed with "some kind of rheumatoid arthritis, but you don't need treatment" in 1988. In 2006 I was diagnosed with Psoriatic Arthritis and treated with a biologic for 14 years. In 2021 I switched to a new rheumatologist who finally diagnosed me with lupus. I had asked about lupus from the beginning because I had so many of the symptoms, but was dismissed by at least 10 doctors because I didn't have the malar rash, so it couldn't possibly be lupus. Since my current diagnosis I am on a biologic and plaquenil and feeling so very much better.

    1. ,
      Thank you for taking the time to share your challenging journey to a diagnosis. I'm glad to hear you are (finally) doing well. It's truly unfortunate to hear of the number of years and doctors it took to get to this point.
      Thank you for being a part of this community, Doreen (Team Member)

    2. so hard to get a firm diagnosis. I’m so happy you have a treatment that is working for you. It makes such a difference in our quality of life ~Racquel~ lupus.net team member

  3. 4 months earlier

    1. , I'm glad they were able to get you answers within a few months, for some it takes years! How are you feeling lately?
      Gabby (team member)

  4. My symptoms began at least 10 years ago but I was not diagnosed until 3 1/2 months ago

    1. I'm saddened to hear it took almost 10 years to get a diagnosis.
      That is truly frustrating.
      How are things going today?
      ~Doreen (Team Member)

    2. Whew.. I have heard so many stories of the lengthy process to get to a firm diagnosis. I am so happy you found a doctor that did what needed to be done to get answers. I hope the treatment process is helping some. ~Racquel~ lupus.net team member

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