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Thread: Help for my mother?

  1. #1
    Join Date
    Aug 2013
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    Default Help for my mother?


    I apologize if this is not the right place to post this, but I'm not sure where to start.

    I'm writing about my 60 year old mother.

    She has been getting sicker and sicker, getting more and more individual diagnoses since about her late 20s. There are so many things wrong with her health I just refuse to believe there is not some common thing under pinning all of it.

    The latest thing to happen to my mother is brain swelling after surgery to 'clip' a brain aneurysm. A couple of years after the surgery she started getting constant headaches. A scan revealed massive swelling of the right hemisphere of her brain, the side the clips were on.

    She had some little abscess type things removed, and the swelling abated. But then, last scan, 50% of it is back again. None of the neurosurgeons/neurologists have any idea what is wrong. and so she is living with the scary situation of having brain swelling of unknown cause.

    As I say, this is the latest thing, but there are so many other things wrong with her health. I will post the list of her diagnoses in the hope someone might be able to say if it sounds like she might have lupus.

    Dry eyes
    Corneal dystrophy
    Severe prgressive damage to optic nerves
    Irritable bowel syndrome
    Gastric ulcer
    Facial pain
    Hashimoto's disease (thyroid)
    Raynaud’s phenomenon
    Allergies to skin/hair products
    Sapho syndrome (arthritic type swelling in her collar bone) Has been on anti-inflammatories for that for years
    Had glandular fever in late teens

    Negative to ANA

    I know you are not Drs and cannot diagnose, but I'm just wondering if any of these things sound like she might have lupus. A rheumatologist suspected lupus ages ago - well before many of her conditions now had even developed - but as she was negative to ANA they dropped it.

    Many thanks in advance for any help anyone can offer.

  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    You are correct, we are not doctors and cannot diagnose your mother for you. What I can tell you is that there is a condition known as "ANA- Negative Lupus". 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 to diagnose it. So, it's presence (or lack of) should not determine or negate a Lupus diagnosis.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.

    In some instances, some patients exhibit traits/test results consistent with lupus, specifically these four, 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 go hand in hand. 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.
    If not all four, than any diagnosis is presumptive. It is presumed the patient has lupus, even if the ANA test comes back negative.

    The general consensus was, at first, that ANA-negative lupus is very rare. However, more and more cases of ANA-Negative Lupus have been diagnosed in patients. In some cases, ANA-Negative Lupus is 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 illness.

    If your mother has had the above four traits/tests and they were positive, then it is possible for her to have ANA-Negative Lupus.
    I realize that I have not given you an answer, but I hope that this information has been a bit helpful.

    Peace and Blessings
    Look For The Good and Praise It!

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