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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~ 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. I went to 6 or 7 different Rheumatologists they told me the same thing about the rash. It took 13 yrs for me to get diagnosed. These Dr's need to stop putting everyone in a box! As we all know everyone is different! That's what they need to realize.

    2. , I am glad you joined this conversation. And, yikes! I am so sorry you had to visit so many Rheumatologists just to get a proper diagnosis. That's just inexcusable!

      Best, Erin, 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~ team member

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