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Thread: New to forum.... with some questions..

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    Default New to forum.... with some questions..

    Hi there,

    My name is Candace and I am a mommy of four kiddos.. One of which has had tons of testing over the past year .... She got really sick last year and after tons of test came back they thought she had cancer... well they did the bone marrow and other sorts of scans and ruled that out..... She has been going back and forth to the hemotologist getting tested... For a few test her white cells and platlets were coming back low ..All of her blood results are finally coming back good besides the ANA which is has tested positive twice.. the last one came in at 1.640 ( please can someone explain to me what that level means) all I have been told is that it is high.. The first ANA was high but this second test just got higher... My daughter is 7 years old. Her main things are very achy joints arms and behind the neck mainly and she does get fever blisters...and at times she does get super exhausted.and we just found out that she was having alittle bit of a hard time seeing so she just got a pair of glasses.. ..... I am glad I found this site so hopefully I can learn more about autoimmune problems.. We have been referred to a pediatric rheumologist (( i might have got that wrong all these words are so confusing)) to further her testing....

    Just wanted to add any input would be greatly appreciated.. I am just really confused and don't know what to think or what is going on..

    Thanks for reading,,
    Candace

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    Welcome sweetsugarpie,

    I am sorry to hear about what your daughter has gone through; it's a lot of an adult let alone a child. My heart is with you along with my thoughts and prayers. On this forum under newly diagnosed; Saysusie has posted the tests that are typically ran for Lupus. Does she have more joint pain after being outside in the sun? Rashes, coin and raised?

    Here is the definition of ANA per webmd:

    An antinuclear antibody (ANA) test measures the amount and pattern of antibodies in your blood that work against your own body (autoimmune).

    The body's immune system normally attacks and destroys foreign substances such as bacteria and viruses. However, in disorders known as autoimmune diseases, the immune system attacks and destroys the body's normal tissues. When a person has an autoimmune disease, the immune system produces antibodies that attach to the body's own cells as though they were foreign substances, often causing them to be damaged or destroyed. Rheumatoid arthritis and systemic lupus erythematosus are examples of autoimmune diseases.

    An ANA test is used along with your symptoms, physical examination, and other tests to find an autoimmune disease.

    Why It Is Done
    An antinuclear antibodies (ANA) test is done to help identify problems with the immune system, such as:
    Rheumatoid arthritis.
    Systemic lupus erythematosus (SLE).
    Polymyositis.
    Scleroderma.
    Sjögren's syndrome

    Many of us who have Lupus have high ANA and along with an abnormal Sed Rate and high Anti-DS DNA by Farr, complements C3 & C4, and CRP. Seeing a rhuematologist is probably the best for your daughter. Do you keep a log of symptoms, etc? Another suggestion is to ask the Rhuemy to have the above tests ran in order to rule out Lupus.

    Lupus is where your body's good cells attack the other good cells. The symptoms are joint pain, sun sensitivity (rashes to light exposure and flourescent lights), chronic fatigue and anemia.

    Many take Plaquenil which helps with the joint pain and rashes though we still avoid sun and flourescent lights. Prior to starting Plaquenil, they will request a visit to the opthmalogist for a plaquenile baseline and then have 6 month eye checks. Over long term usage (10+ years) Plaquenil can possibly effect the eyes though most people do not have problems with their eyes while on Plaquenil.

    A huge suggestion is to avoid sunlight as much as possible; wear protective clothing (nylon, polyester, long sleeves, hats). There is a website Coolibar that has UV clothing for those of us who are reactive to UVA & UVB light. We have to really take protective measures in order to protect all our organs such as our heart and kidneys as well as our skin
    (which is an organ).

    A very good book to read by Daniel J. Wallace is The Lupus Book, a guide for patients and their families. It is in the library system and can be found on amazon very reasonably. A website to check out is the Lupus Foundation of America.

    Hang in there and take a deep breath; you probably feel as if you are on a roller coaster with the ups and downs. Your daughter needs you to be relaxed and supportive. You have joined a very supportive and loving group of people on this forum. You and your daughter are not alone. Please keep us updated after she sees the rhuemy. You are both in our thoughts and prayers.

    Take care & God Bless,

    Faith 8)

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    I think Faith said it all so I just thought I'd leave some hugs and let you know that I too will be thinking of your daughter and the whole family. Please keep in touch and let us know how things are progressing!
    Claire
    x
    Numpty:- (num-p-tee) dialect, chiefly Scot, ~n. 1. a bumbling fool: one who is intellectually challenged. 2. widely known in Scotland as an MSP (Member of Scottish Parliament).

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    And, I'll just add a bit of information about the ANA titer. ANA means antinuclear antibody. Antibodies are proteins, produced by white blood cells, which normally circulate in the blood to defend against foreign invaders such as bacteria, viruses, and toxins. Autoantibodies, instead of acting against foreign invaders as normal antibodies do, attack the body's own cells.Antinuclear antibodies are a unique group of autoantibodies that have the ability to attack structures in the nucleus of cells. The nucleus of a cell contains genetic material referred to as DNA (deoxyribonucleic acid).
    The ANA (antinuclear antibody) test is performed on a patient's blood sample as part of the diagnostic process to detect certain autoimmune diseases, such as Lupus. The test is sometimes called FANA (fluorescent antinuclear antibody test), a blood sample is drawn from the patient and sent to the lab for testing. Serum from the patient's blood specimen is added to microscope slides which have commerically prepared cells on the slide surface. If the patient's serum contains antinuclear antibodies (ANA), they bind to the cells (specifically the nuclei of the cells) on the slide.
    A second antibody, commercially tagged with a fluorescent dye, is added to the mix of patient's serum and commercially prepared cells on the slide. The second (fluorescent) antibody attaches to the serum antibodies and cells which have bound together. When viewed under an ultraviolet microscope, antinuclear antibodies appear as fluorescent cells.
    If fluorescent cells are observed, the ANA (antinuclear antibody) test is considered positive. If fluorescent cells are not observed, the ANA (antinuclear antibody) test is considered negative.
    A titer is determined by repeating the positive test with serial dilutions until the test yields a negative result. The last dilution which yields a positive result (flourescence) is the titer which gets reported. Since each dilution involves doubling the amount of test fluid, it is not surprising that titers increase rapidly. In fact, the difference between titers of 1:160 and 1:320 is only a single dilution. And it doesn't necessarily represent a major difference in disease activity.

    Lower than 1:20 is considered a negative result.

    1:80 is considered a "low positive" and more tests should be ordered. 95% of people with 1:80 ANA do not have Lupus.

    1:16 is considered positive and if SED rates and Complement tests are positive, Lupus is considered.

    1:32 is a definite positive and mean the disease is active.

    1:64 is considered very high and tissue damage is imminent.

    The higher the titer, the more dilutions were needed to yield a negative result. High (or positive) ANAs are found in patients who have various autoimmune diseases, but not only autoimmune diseases. ANAs can also be found in patients with infections, cancer, lung diseases, gastrointestinal diseases, hormonal diseases, blood diseases, skin diseases, and in elderly people or people with a family history of rheumatic disease.
    The ANA results are just one factor in diagnosing Lupus, and must be considered together with the clinical symptoms and other diagnostic tests.

    ANA titers go up and down during the course of the disease, and a high or low titer does not necessarily mean the disease is more or less active. A titer above 1:80 is usually considered positive for lupus.

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

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Thank you everyone so much for all the kind responses. It has been really helpful and informative.

    I will def. let you know what come of the test on the 30th of this month at the rheumy. I am praying for the best.

    Saysusie.

    I do have a quick question . When the nurse told me her ana results she said one and 640 so is that what 1:640 is ?? I am so sorry I am really lost all I know is she said it was pretty high, but not sure how you write it out on paper.. Also the ana titer scale you provided is very very helpful .. yet scares the hell out of me. considering her numbers. I was wondering tho why the 1:80 is considered a low positive but the 1:640 is not.. I am soo confused... please forgive me for the silly questions I just am alittle lost.. Is that because it is one and 80 ??
    Thanks so much for your reply as well.

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    I am so sorry, I forgot to put the zeros on some of those numbers. It should have read:
    1:80 is considered a "low positive" and more tests should be ordered. 95% of people with 1:80 ANA do not have Lupus.
    1:160 is considered positive and if SED rates and Complement tests are positive, Lupus is considered.
    1:320 is a definite positive and mean the disease is active.
    1:640 is considered very high and tissue damage is imminent.

    If you notice, each number is double the previous number. That equals one more dilution. 1 to 640 is the same as 1:640 which roughly translates into 7-8 dilutions before antibodies are no longer detected. This is a high positive and action needs to be taken in order to prevent tissue damage if it has not yet occurred or to prevent any further damage if it has occurred.

    I am sorry for the confusion. Some doctors will write it as 1:16 or 1:64 understanding that this means 1:160 and 1:640. Again, anything 1:120 and below is considered negative. Also remember that each lab uses its own values, so tests done by different labs can have different numbers.
    I hope I've clarified my previous post. Again, I apologize for the confusion!

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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