Within range with Speckled results. Still no diagnois.

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I have had multiple blood work ups, full panels. My ANA range is 160 and but the doctors will not diagnosis me with Lupus or anything close. I've been rushed to the emergency room 3 times for inflammatory issues with my eye. The eye doctors consistently tell me it's an autoimmune issue but the doctors disagree. I keep a low grade fever and feel like I have the flu constantly. I have complained of fibromyalgia like symptoms but they tell me that is unexplained and can't really be tested, I live with chronic symptoms no one seems to be able to explain and they tell me my results are all normal. I've had Thyroid test after test to tell me they are all normal. Yet, I'm on medication for Seizures and they ask me if my blood pressure has always been low. That doesn't make sense. I took a look at my blood work results, it showed Speckled. I didn't know what that meant until I looked up it this last time my eye went out on me. Turns out it is a possible indicator of SLE Systemic Lupus Erythematosus which is harder to detect. Why didn't my doctors mention this to me. Why are they not talking to me about this or discussing the possibilities of this being an issue? I really don't understand. I have been searching and still searching for a doctor to just listen to me and help me with these issues. My constant fatigue, I'm always cold, my hair loss (I had to shave my hair bald because it fell out in so many patches), my face is so scared, I thought is was just bad acne, my digestive issues, I keep my nails short because they crack and break, the list goes on. I truly thought is was a Thyroid issue but after all the test I gave up on that. I really gave up on it being Lupus until my eye started feeling like it had rocks in it again. Finally for the 4th time I saw an eye doctor and he said the same thing the other 3 did, it's an autoimmune disease. You should see your doctor. Why does my eye doctor think it is autoimmune but my medical doctors don't. No one will help me because my results are normal but they really aren't. What is going on? What am I missing?

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  • Posted

    Are you seeing a rheumatologist? You should be referred to one. If possible you should ask for an ANA full panel. It's different than the titer test you had with the speckled 160 results. It can help differentiate proteins/autoantibodies.

    I have Lupus with Inflammatory eye issues but not alot of us do. (recurring uveitis and sclerosis)

    Some other autoimmune diseases that affect the eyes are Behcets Ankylosing Spondylitis, Reactive Arthritis and Splondolarthropy arthritis.

    The most important thing is to not give up. Get to a rheumatologist and don't be afraid to get another opinion. Make sure to have the full panel ANA, have your complement levels checked and your esr sedimentation rates checked. You can ask for an antiCCP to rule in/out rheumatoid arthritis and an HLA B27 to see if you carry the gene for Ankylosing Spondylitis.

    I know it's a lot.... but hang in there... A good rheumatologist will consider your symptoms as part of a diagnosis. Don't expect a general practitioner or other specialist to know what a good rheumatologist does.

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    • Posted

      It was a Rheumatologist that ran the test. I so don't want to give up but it is hard. This is years of test with no help. I believe you are correct in that I need a good Rheumatologist. I also need a good doctor as well.

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    • Posted

      That is my ANA Full Panel Test.  And like the other poster said, absolutely correct, ANA double stranded dna usually represents systemic lupus.  The reason I'm pushing the ANA Panel instead of the ANA titer is that sometimes it works better when your autoantibodies are particularly high-or deceptive as they can be in the titer test.  Labcorp offers it.  And the results can tell you what autoimmune disease your results are POINTING TO.  A big plus in diagnosing.

      Imho with your eyes being involved I would hope a rheumatologist would be thinking more towards Behcet's or Reactive Arthritis or a Spondy Arthritis.  It fits much better.  I happen to be one of the few with eye issues and lupus-but it does happen.  Look up Spondyloarthropathies- & Reactive Arthritis- see how that fits your symptoms.

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    • Posted

      I will look into the test. I'm also going to try getting my own independent tests ran per the suggestions.

      Thank you.

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  • Posted

    Hi jeannine95512

    Did you have an ESR blood test and CRP blood test with the ANA blood test.....all these test for inflammation if they are raised and can point to lupus....all mine were high but it turned out i had polymyalgia rheumatica.....also have you had a dsDNA test which is associated with lupus..but not all lupus sufferers have the dsDNA gene........if you have not had ESR,CRP blood tests and checked for dsDNA go back to your doc and ask for these to be tested....you mention fibromyalgia ..there is no test for this...but you could well have polymyalgia rheumatica.....which can lead to GCA giant cell arteritis and this affects the eyes.....let me know whete your pain is..

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    • Posted

      I have not had or heard of any of these tests. I unfortunately rely on my doctors to tell me which test they will do when I tell them I suspect Lupus. I never see any of those tests on my record. I wonder if my doctors don't test me because they don't believe me. I am making note of these tests for my next doctor.

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    • Posted

      Hi jeannine95512

      All these blood tests will show if you have an autoimmune disease which lupus is also PMR.....but the dsDNA is an indicator of lupus only.....definitely ask your next doc to test you for inflammation and lupus....once you are diagnosed with lupus or any another inflammatory autoimmune disease you will be referred to a Rheumatologist.....keep us posted on your progress...best wishes....

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