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Leafosaur

351d

I’ve had multiple doctors suspect an autoimmune disease for me, but my blood labs are never conclusive and they never reach a clear diagnosis. How many people have dealt with this? What did you end up having if they ever figured it out?

Top reply
    • DragonflyHKD

      306d

      I'm going through the exact same thing. My inflammatory tests have been extremely high, autoimmune medication helps me quite a bit but other tests aren't conclusive so doctors don't know exactly what's wrong with me. I have loads of symptoms affecting every system in my body. It's frustrating.

    • DragonflyHKD

      306d

      I'm going through the exact same thing. My inflammatory tests have been extremely high, autoimmune medication helps me quite a bit but other tests aren't conclusive so doctors don't know exactly what's wrong with me. I have loads of symptoms affecting every system in my body. It's frustrating.

    • Belz

      306d

      My blood tests have me at seronegative, but I finally found a great rheumatologist wh wasn’t playing. He went with my symptoms and started me on RA meds right away. Thank God he did cause I couldn’t live one more day with all the pain I was having! My advice is to be persistent and don’t stop putting pressure on your doctors to get you relief. They need to spend the time with you to figure out what is going on!!

    • AnimalBoy

      348d

      Autoimmune disease is a rough one to diagnose. To be able to get conclusive results you have to actively be in an autoimmune flare up and on top of that there's more than 80 known types that they may need testing for as well as some autoimmune diseases being orphan conditions. It sucks, but persistence is the key.

    • DragonflyHKD

      348d

      Same... Autoimmune suspected (I do have a possibly separate, severe autoimmune disorder of the esophagus) but inconclusive tests other than really high inflammation markers and slightly elevated ANA. I was thankfully put on hydroxychloroquine anyway and it's been helpful in reducing both the severity of my pain and how often/how badly I flare up. Maybe we're on the right track? More tests coming up but it's very frustrating not knowing exactly what's going on.

    • Alfubet

      349d

      There is a big possibility it is autoimmune. Think of it this way, there are about 600 different autoimmune diseases of the thyroid alone. But modern medicine only has tests to identify 3. I ended up getting diagnosed with EDS and then it snowballed from there.

    • Quinniffer

      351d

      They always suspected an autoimmune disorder for my symptoms but none of them came back inconclusive. They refused to send me to rheumatology so I never got an answer

    • Ash.G

      351d

      I might have to get autoimmune test for fibromyalgia at some point in my life.

    • Zebrapotato37659

      351d

      Same I recommend rheumatology. Depends on symptoms but could be a nerve disorder, fibromyalgia, or something else. Prayers

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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