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Thread: So frustrated

  1. #1
    Join Date
    Jun 2012
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    Default So frustrated

    So how come you can have practically every symptom of lupus, meet more than 4 of the criteria, but since you have negative ANA there is no possible way you have lupus.

    I've been to 2 rheumys. The first one was horrible and was so rude to me and just dismissed me. Second guy was nicer and put me on lyrica, but says my labs look great so I'm fine. Although he admits things can change and wants to see me in 6 weeks to see how I'm doing. But he says no lupus. I just don't get it. I'm getting more and more miserable. I've looked at other things it could be and nothing else seems to fit. I mean, I have a malar rash, photosensitivity especially with florescents, mouth and nose ulcers, joint pain, muscle pain and weakness, kidney issues that no one is worried about!, Raynaud's, vasculitis, neuro issues, pleurisy (or might be costochondritis, they haven't been able to rule out either), recent allergy to sulfa drugs, extreme fatigue, skin issues, the list goes on and on.

    But since I have negative ANA, they just brush me off. Meanwhile I'm just getting worse and having more and more neuro issues and more frequent flares. I'm having a hard time even keeping up my house and taking care of the kids because I feel so awful!! Yet they seem to think I'm fine!!

  2. #2
    Join Date
    May 2010
    Thanked 312 Times in 251 Posts


    I can't remember if you posted about it before, but what's your thyroid like? How about the B12 level? You can get all sorts of neuro stuff with slightly low B12, and having low thyroid can really throw your system out of whack (as can low adrenal and quite a few other things). Has your blood sugar been checked?
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

  3. #3
    Join Date
    May 2007
    Seaside, Ca.
    Thanked 948 Times in 732 Posts


    It's good that the doc is treating your symptoms. That seems to be the best that many of us can find - a doc who will treat the symptoms, not just dismiss us because of a lab test. Some of them seem to be too hung up on those lab tests!
    Is it possible for you to find another rheumy - perhaps at a teaching hospital?

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    tgal (10-21-2012)

  5. #4
    Join Date
    Nov 2001
    Victorville, California
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    Hi Wendy;
    Perhaps you should let your doctors know that there is a condition known as ANA-Negative Lupus. Second, your doctors should understand that the ANA test is not a definitive marker for Lupus, it is one of many tests used to determine if Lupus is present (therefore, if ANA is negative, but other tests/symptoms indicate Lupus, then the person CAN have Lupus/ Conversely, a person can have a Positive ANA and NOT have Lupus!). Here is a basic definition of the syndrome:
    "In simplest terms, ANA-negative lupus is a condition in which a person’s ANA – or antinuclear antibody – test comes back negative, but the person exhibits traits consistent with someone diagnosed with lupus. The ANA test is used to screen for lupus, not diagnose it. Typically, if a person tests positive for the antinuclear antibody, it means only that the person could have lupus. Further tests are needed to determine if a person actually has lupus. Those include tests for Sm (Smith), Ro/SSA (Sjogren's syndrome A), La/SSB (Sjogren's syndrome B), and RNP (ribonucleoprotein) antibodies.

    If the ANA test comes back negative, and all other tests are negative, then it is assumed that lupus cannot be present, and usually no further testing is needed.

    But in rare instances, some patients exhibit traits (symptoms and test results) consistent with lupus, specifically these four test results, which unequivocally diagnose SLE:

    • High titer anti-double stranded DNA antibody
    • Anti-Sm (Smith) antibody
    • Biopsy-proven kidney disease
    • Biopsy-proven skin disease

    Furthermore, antibody tests and symptoms must go hand in hand. You cannot diagnose one and ignore the other. Antibodies alone do not diagnose the disease. If you have all four of the above referenced traits, you will, most likely, be diagnosed with SLE. It is presumed that you have Lupus, even if the ANA test comes back negative.

    The general consensus is that ANA-negative lupus is very rare – and is more a term given to patients with “lupus-like” disease. Some doctors might call it “mixed connective tissue disease,” “undifferentiated connective tissue disease,” or “forme fruste lupus” – or “hidden lupus”. Each has specific and separate meaning and describes different forms of the illness.

    In short, the medical community cannot agree as to whether ANA-negative lupus truly exists as a medical condition. Most use it as a way to explain illness that mimics lupus or may be lupus, but can’t be unequivocally diagnosed as lupus."

    I hope that this has been helpful to you. Please let me know if you need anything further.

    Peace and Blessings
    Look For The Good and Praise It!

  6. The Following 5 Users Say Thank You to Saysusie For This Useful Post:

    Derrie (10-21-2012), jmail (10-22-2012), n.mac (10-21-2012), tgal (10-21-2012), wendya432 (10-22-2012)

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