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still waiting

Hi all I'm new here. I haven't been diagnosed with lupus however thru my own research I see my symptoms and some test results certainly point to it. My doctors have yet to give any definitive diagnosis. But they treat me with methotrexate. Even though I don't have RA either.
I do have a positive ANA and other testing came back positive. i just can't pin the doctors down to a diagnosis. Is this common?

  1. , unfortunately, it's very common. There are plenty of people on this site who are waiting on a diagnosis. If you are looking for some insight and information, this might be a good place to start (it also includes some tips) https://lupus.net/living/uncertainties.


    I am sorry you are going through this, it can be so difficult to manage symptoms without a diagnosis! Have you seen a rheumatolog

    1. Yes I have seen a rheumatologist and he said it wasn’t lupus. However, I have new symptoms and won’t see him till September. He also said I don’t have rheumatoid arthritis or Sjogrens. So no one can tell me anything. This started 2 yrs ago. With headaches, swelling, double vision, vision loss, and fatigue. Just to name a few. The doctors did the necessary tests and I had a positive ANA not just one time but multiple times and not just the screening but the other test. Plus all the other tests that come with that the C4, C3, ESR, etc…some were not normal but not too unusual and some were off the charts. So it is so frustrating to not have any answers. Thanks for listening. ☺️

    2. that is so, so frustrating. And it is hard to know what to do when you don't have a diagnosis. We'll be thinking of you in September when you finally see the rheumatologist, and in the meantime, I hope the others here can provide some support as you manage these new symptoms. - Liz (Team Member)

  2. I waited over seven years for a diagnosis however I had not heard of Lupus except in a movie and it was her death sentence. The internet freaked me out when I found the support groups on Facebook and this site for info.

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