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Thread: Newly dx'ed and scared

  1. #1
    Join Date
    Sep 2006
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    Default Newly dx'ed and scared

    Hello all-
    I am here b/c it seems I might have SLE. I went to see a hematologist b/c of a positive APA panel. He then ran an ANA panel and these were my results:

    ANA titer 1:160
    Speckled and homogenous pattern
    Smith antibody 188 (>120=positive)

    Everything else was in normal range. Does this mean I definintely have SLE?
    I also have Hashimotos--could that be what's causing these results?
    I've read through the symptoms and I really don't have anything.

    I can't get in to the rheumatologist until next week and am going crazy. Any help would be appreciated.


  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    Hi Lillibelle:
    I know it is frightening to have to wait for answers and have to deal with the stress of not knowing. Unfortuantely, Lupus is such a difficult disease to diagnose and there are no definative tests that can say absolutely yes or no!
    There are symptoms, lab tests, and blood tests that can lead a diagnosis eventually. But, for most of us, this process can take anywhere from months to years before a final diagnosis is made! SLE is a multi-system disease, & before a multi-system disease can be diagnosed, there have to be symptoms in many parts of the body & lab work (blood tests) that supports the presence of a multi-system disease.
    SLE is also difficult to diagnose because it is a disease that does not typically develop rapidly, but develops slowly & evolves over time and it develops differently in each patient. Symptoms come & go and they change, it can take time for the disease to show up in blood tests, which one time can be positive & the next be negative again. It can take months or even years for enough symptoms to show up for the doctor to be able to make an accurate diagnosis. Lupus symptoms vary from patient to patient. They even vary within one patient from time to time. Lupus is a disease that can attack different organ systems of the body, & it therefore affects everyone differently.
    SLE is known as a great imitator, because it mimics so many other diseases & conditions, which often have to be ruled out before a final diagnosis is made. SLE is difficult to diagnose because there is no one diagnostic test for lupus, the doctor has to do a full examination of the patient & do various tests, before looking at all the evidence & coming to a conclusion.
    Lupus is a henious and unpredictable disease!! Some of the most common symptoms are: Arthritis (swelling and pain of the joints), muscle pain and weakness, fatigue, sun-sensitivity, hair loss, "Butterfly" or malar rash (a rash across the nose and cheeks), fever, anaemia, headaches, recurrent miscarriages. Some people will have only a few symptoms, others may have them all.
    Lupus is a chronic (long-lasting) autoimmune disease where the immune system, for unknown reasons, becomes hyperactive & attacks normal tissue. This attack results in inflammation & brings about many different symptoms.
    'Auto' means 'self', so autoimmune literally means that the immune system fights the body itself. Instead of fighting & attacking the bad tissues, such as viruses, it turns on itself & attacks the good tissues.
    Antibodies are proteins produced by white blood cells (B lymphocytes). Their normal function is to glue up bacteria and make them easy for the white blood cells to capture and destroy. When the immune system goes wrong, antibodies can be formed that bind to bits of the body (an auto-antibody). Sometimes infection can cause auto-antibodies to be produced and this may be one of the causes of Lupus. The antibodies circulate in the blood, but some of the body's cells have walls permeable enough to let some antibodies in. These can then attack the DNA in the cell's nucleus. That's why some organs can be attacked during a flare while others aren't.
    The ANA test: The anti-nuclear antibody (ANA) test is a blood test that measures the antibodies that are directed against various components of the nucleus, so-called anti-nuclear antibodies. The nucleus of living cells contains many chemicals, including the well known DNA & RNA. For reasons which are unclear, patients produce antibodies which are directed against a number of these molecules.Throughout the world, the ANA test has become the screening test for lupus. Patients with active lupus generally have high levels of anti-nuclear antibodies. About 95% of people with SLE will have a positive ANA test at some point during their disease. It is rare to have lupus & have a negative ANA test, however it does happen, it can also take a while for the ANA test to become positive. It is also possible for the ANA to convert from positive to negative following administration of steroids, cytotoxic drugs or kidney failure. Unfortunately, the ANA test, although a very useful screening test, is not specific to lupus. It can be positive in other connective tissue disorders, & also in healthy people. Therefore, a positive ANA test is not diagnostic of lupus, & is only an indicator. A positive ANA test only satisfies one criterion, a person would need to satisfy at least three additional criteria before a doctor would consider diagnosing lupus.
    WIth reference to your Hashimoto:
    People with Lupus often develop other autoimmune diseases (and people with other autoimmune diseases often develop Lupus). Unfortunately, that is quite common. Antibodies can develop against a variety of organs, tissues or glands, resulting in many different diseases. Among the most frequently experienced autoimmune diseases for a lupus patient to have are Sjogren's Syndrome, multiple sclerosis, & Hashimoto's thyroiditis.

    I would like to suggest that, in order to help alleviate some of your stress and your fears, that you learn as much as you can about Lupus and Hashimoto - read all of the information on this site, & follow the links to other sites like the Lupus Foundation of America, The Lupus Site and others. ALso, read some of the many books available on lupus, The Lupus Site has a good list of books, the books are available at a discount!
    Also, come here often. Everyone here is more than willing to help you through this, to answer your questions, provide information, give you support and let you know that you are not alone!!

    I wish you the best
    Peace and Blessings

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