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Thread: I am Also New and Don't Know Whats Going On (???!!!)

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    TEROID :lol:
    No, I have heard nothing from her and am becoming increasingly concerned. I hate having no way to contact her!! I almost want to ask if members could provide us with an emergency contact so that we can allay our fears when they are away for a while :?
    Anyway...I am holding her up in prayer and just waiting to hear from her!!

    Saysusie

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    Default Thank You!

    Saysousie you said it all just there. I guess that answers my smokers question. Will quit effective immediately! As far as the ANA is concerned, after reading your advice I will keep away from this and just sit tight and wait till the doc gives me an okay to go back to work.

    I swear also that the stress was a major cause of my latest bout and as such will proceed to reduce thru whatever means necessary!

    You are a God send and will light a candle for you!

    All the best for the best!
    J

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    You are MOST welcome! I am, and all of the other members are, here to help you whenever you need us!


    Saysusie

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    Default Tests/Not sure if I even Have the Disease Sometimes

    Hi Saysousie,

    Further to my email yesterday, I could not find the section on this site that focuses on the tests which are conducted for SLE. My wife and friends believe that my level of denial may be beginning to work against me. I have for the most part crossed that threshold into acceptance and just want irrefutable evidence that I do have SLE.

    FYI, what sold me was reading my blood tests which went back as far as last November. My sed rate was off the charts at 134 and my platelets, RBC's were both on the bad side. Outside of this my energy was sapped, especially late October onwards; so when my doctor ordered the ANA I was not surprised to see the positive number which coupled with my DLE convinced the doctors that I was on the cusp if not full blown SLE.

    Also, outside of the disabling (at times) fatigue, my joints do ache in an odd way at varying times of the day.

    Forgive the wordiness, but any thoughts?

    Thanks,
    J

    PS How did you become so knowledgeable?!!!? I told my wife that you ought to be on the lecture circuit!

    I guess my rheumy (as Teriod calls them) is right

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    Hi Juanerd; I am much too dedicated to this site to be away from it in order to be on the lecture circuit (lol). But, thank you to you and your wife for thinking that I am qualified to do that!!

    Anyway...here is probably an overload of information of Lupus testing. But, I am certain it will answer most of your questions. Let me know if you find anything confusing or just need more information!

    Peace and Blessings
    Saysusie

    Lupus medical testing and a blood test can be done by the patientís physician or a specialist such as a rheumatologist or clinical immunologist. When a patient has many of the classic lupus signs and symptoms, it is much easier to make a diagnosis than when the symptoms are subtle and imitate other common illnesses. Lupus medical testing consists of checking for symptoms, getting a physical exam along with a complete medical history and a blood test for ANA (antinuclear antibody). Once this lupus medical testing and a blood test are done, if the patient both tests positive for ANA and experiences symptoms of Lupus, a diagnosis can be made. However, some physicians will want to do further lupus medical testing to reinforce the diagnosis.

    In lupus medical testing, a blood test is used to look for antibodies to various substances that a person produces when she suffers from Lupus. This lupus blood test is helpful to either reinforce a diagnosis when the patient has symptoms and a positive ANA blood test or when a patient has a negative ANA blood test but the doctor suspects lupus.

    Other lupus medical testing involves a blood test to determine a complete blood count (CBC). This blood test is useful in finding out how healthy a person is. A CBC blood test is also helpful in finding infections, finding out why a person experiences symptoms, and finding out how a patient responds to medication.

    The complement test, a blood test that looks for low levels of complements, shows that the body is either busy fighting infections or destroying its own tissues. This blood test is useful in lupus medical testing because Lupus is an autoimmune disease which is a disease that causes the body to attack itself.

    Erythrocyte sedimentation rate (ESR or sed rate) is a blood test that is useful in lupus medical testing because it shows conditions that cause inflammation. This blood test is also used in determining the effectiveness of certain medications used for the treatment of lupus. A fourth blood test that is used in lupus medical testing is C-reactive protein test (CRP). The CRP blood test is useful in lupus medical testing because CRP levels go down after the use of medications to treat Lupus and helps the physician watch conditions that cause inflammation.

    Other lupus medical testing consists of urinalysis, Kidney biopsy, skin biopsy, computed tomography (CT) scan, magnetic resonance imaging (MRI), X-rays and echocardiography.

    IN MORE DETAIL

    In lupus medical testing, the blood test and other lupus medical tests are compared to symptoms and the results are interpreted by the physician. Lupus medical testing may have to be repeated several times because a person with lupus may test negative one day and positive the next. This will show the activity level of the disease. Unfortunately, there is no single test for lupus. If you suspect lupus, it is important to keep tract of symptoms, work closely with your doctor, and take the necessary tests.

    ANA,FANA (Fluorescent)-Anti-Nuclear Antibody
    Anti-DNA
    anti-Sm antibody-_Antibody to the Smith antigen
    anti RNP-Antibody to the Ribonucleoprotein
    anti-Ro,(=anti-SSA(=anti-Ro))
    anti-La,(=anti-SSB)
    Complement,CH50,C3,C4
    aCL, aPL, lupus anticoagulant
    BUN (Blood Urea Nitrogen)
    Urinary protein, proteinuria, albuminuria
    Platelets- blood cells that aid in clotting.


    Are you confused by the names of the blood tests doctors use to diagnose or monitor lupus? Do you know what the tests mean? If you are confused, perhaps the information below will help. In looking at the following information, remember:

    An antibody is a protein (such as gamma globulin and other globulins) that the body normally makes to defend itself against bacteria (germs), viruses, and other things that cause harm. In lupus, the body mistakenly makes antibodies against a person's normal tissue.

    An antibody is named according to the substance (antigen) which it is made to fight. Thus, an antibody induced by a polio vaccination is called anti-polio virus antibody.

    Because the basic abnormality of lupus is an immune system that is in overdrive, most of the tests measure the degree to which the immune system is active.

    Other tests measure the function of specific organs such as the kidneys.

    A lot of these tests and names are confusing. Don't worry about such designations as mg/dL (milligrams per deciliter). These are technical terms that refer to a specific way of measuring one or another substance. Some laboratories use international units (IUs); some laboratories report the results of chemical tests in mols instead of milligrams. I've given the measurements that are most often used. If your laboratory reports your results in a different way, ask your doctor to explain which units are used and what is normal for that laboratory. I have not given numbers for tests that are either reported as positive/negative, or in cases where there are too many ways of reporting to summarize briefly.

    Keep in mind that the statements above are just rough guides. There are always exceptions to every rule. I've listed the most common tests and the most common uses, but they may differ for you. If you are still confused, or you are in doubt, ask your doctor for an explanation.

    Test: ANA, FANA (Fluorescent) - Anti-Nuclear Antibody

    What test is for: An antibody against the nucleus, or central controlling part of each cell. All organs are made of cells and all cells have nuclei. ANAs have four basic patterns describing the way they look under the microscope. The patterns are "diffuse" (the whole nucleus lights up), "peripheral" or "rim" (only the ring around the nucleus does), "speckled" and "nucleolar" (two very specific spots light up).

    What a positive test means: Almost all patients with lupus have a strongly positive test (still positive even when diluted more than 100 times, commonly expressed 1:100). Many normal people also have positive tests, usually less strong (1:10-1:30). The "diffuse" and "speckled" patterns are common in lupus, but are also seen in other diseases and normal people. The "peripheral" pattern is relatively specific for lupus. The "nucleolar" does not often occur in lupus. A positive test means lupus is a possible diagnosis.

    What a negative test means: A negative test usually means that a patient does not have lupus, or that lupus is in remission. However, most patients in remission do not have negative ANAs.

    Test: Anti-DNA - Antibody to Double Stranded Deoxyribonucleic Acid

    What test is for: DNA is the major part of the cell nucleus, and is the stuff of which our genes are made. The anti-DNA antibody is usually the reason for the positive ANA. People who have a positive ANA who do not have anti-DNA have antibodies against other parts of the nucleus.

    What a positive test means: An unequivocally positive test in a person with symptoms almost always means lupus is present. The higher the amount, the more likely the disease is active. Rarely, well blood relatives of lupus patients have positive tests, as do some patients with rare other diseases.

    What a negative test means: A negative test does not mean that lupus is not present, since other tests can still be positive in a person who has had a positive test; a negative test usually means remission.

    Test: anti-Sm antibody - Antibody to the Smith antigen

    What test is for: The Smith (first patient) antigen is a protein that helps DNA stay in its correct shape as it goes about its business directing the cell how to do its work. Together, anti-Sm, anti-RNP, anti-Ro/SSA, and anti-La/SSB are known as ENA antigens.

    What a positive test means: Like anti-DNA, this test generally means that lupus is present. False positive tests are very rare.

    What a negative test means: A negative test does not mean that lupus is not present, since other tests can still be positive. Most persons with lupus have either anti-DNA or anti-Sm antibodies. Negative tests for both generally mean that lupus is not present.

    Test: anti-RNP - Antibody to the Ribonucleoprotein

    What test is for: The RNP antigen is similar to the Smith antigen, but has a different job in the cell.

    What a positive test means: A positive test occurs in some patients with lupus but also in other related diseases. It helps to classify a patient but it is not usually useful to make a specific diagnosis nor to follow for worsening or recovery.

    What a negative test means: A negative test excludes a related disease, Mixed Connective Tissue Disease.

    Test: anti-Ro, (=anti-SSA (= anti-Ro)) - Antibody to the Rose (first patient) antigen; antibody to the Sjogren's syndrome A antigen; the test was described simultaneously in both lupus and the related disease.

    What test is for: The test is designed to look for the Ro/SSA antigen similar to, but this antigen has a different job than the Smith antigen.

    What a positive test means: The test is often positive in lupus patients and in patients with other related diseases. In pregnant women, it makes a complication known as neonatal lupus possible. Only about 1/4 of women with this antibody have a child who develops neonatal lupus.

    What a negative test means: If both this test and the related anti La/SSB test are negative, the child of a pregnant woman will not develop neonatal lupus.

    Test: anti-La, (=anti-SSB) - Antibody to the Lane (first patient) antigen, antibody to the Sjogren's syndrome B antigen.

    What test is for: Similar to the Ro/SSA antigen.

    What a positive test means: Similar to the Ro/SSA antigen.

    What a negative test means: Similar to the Ro/SSA antigen.

    Test: Complement, CH50, C3, C4 - Complement is a series of proteins that help antibodies fight antigens: CH50 refers to the amount of complement necessary to destroy 50% of red blood cells in an immune reaction. C3 and C4 are the third and fourth components of the complement proteins.

    What test is for: Complement is used up in immune reactions such as lupus.

    What a positive test means: Low levels of complement mean the body is undergoing a severe immune reaction, primarily in the kidneys. Lupus is one cause, but there are many others. CH50 is usually 150-300 units. C3 is about 80-150 mg/dL. C4 is about 15-40 mg/dL.

    What a negative test means: Normal levels of complement make lupus inflammatory kidney disease unlikely. Other types of kidney disease, such as leaky kidneys or scarring, can still occur even if complement is normal. Other types of lupus do not usually lower complement.

    Test: aCL, aPL, lupus anticoagulant, antiphospholipid antibody, aPTT, dRVVT - Antibody to Cardiolipin, antibody to Phospholipid, Activated Partial Thrombosplasin time; Dilute Russell Viper Venom Time.

    What test is for: Cardiolipin is a phospholipid (a type of fat that contains phosphate). There are many other phospholipids, but cardiolipin is the one most frequently tested. The test can be performed on clotted blood. The lupus anticoagulant test (for antibodies to clotting factors) can be performed only on fresh blood since it measures the time it takes the blood to clot. Except for the different techniques, the tests measure approximately but not exactly the same things, so it is possible to have a positive aPL test and a negative lupus anticoagulant, and vice versa. The membranes that surround all cells are composed of phospholipids, aPTT and dRVVT are two specific clotting tests used to screen for a lupus anticoagulant antibody.

    What a positive test means: An unequivocally and repeatedly positive test means a higher than normal likelihood of developing internal blood clots or problems with pregnancies. Weakly positive tests that come and go are common and generally not important. About 1/3 of lupus patients have either an aPL or lupus anticoagulant test positive. Normal aCL (immunoglobulin G, IgG) is usually under 15 GPL units, for immunoglobulin M (IgM), under 10 MPL units. Normal a PTT is usually under 35 seconds.

    What a negative test means: A negative test markedly reduces the likelihood of internal clotting problems or certain types of pregnancy complications.

    Test: BUN (Blood Urea Nitrogen), creatinine, creatinine clearance

    What test is for: BUN and creatinine are two chemicals normally excreted by the kidneys; creatinine clearance is a determination of how much creatinine the kidneys can excrete in a given period of time.

    What a positive test means: BUN and creatinine levels both rise when kidney function fails; creatinine clearance falls. Normal BUN is usually 15 mg/dL or less, creatinine under 1.0 mg/dL, and creatinine clearance more than 80 ml/min.

    What a negative test means: Normal levels mean that kidney function is normal, but do not mean that everything about the kidney is normal.

    Test: Urinary protein, proteinuria, albuminuria

    What test is for: The kidneys do not normally excrete protein.

    What a positive test means: Kidneys that leak protein are abnormal. The more they leak the worse the injury. Normal is under 1/4 gram in 24 hours. Over 4 grams a day is high.

    What a negative test means: Kidneys that do not leak protein are usually normal or near normal. Rarely, function can be abnormal even without protein in the urine.

    Test: Platelets - blood cells that aid in clotting.

    What test is for: Platelets are used up in severe clotting and can be reduced in number by antibodies to platelets.

    What a positive test means: Low platelets occur for several reasons in lupus. All reasons need to be checked out since very low platelets are associated with spontaneous bleeding. Normal platelet count is around 150,000/cubic mL or blood.

    What a negative test means: A normal platelet count means no problems in this system. Platelet function can, at times, still be abnormal, even if the number is normal.

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    Default Re: Tests/Not sure if I even Have the Disease Sometimes

    Quote Originally Posted by juanerd
    Hi Saysousie,

    Further to my email yesterday, I could not find the section on this site that focuses on the tests which are conducted for SLE. My wife and friends believe that my level of denial may be beginning to work against me. I have for the most part crossed that threshold into acceptance and just want irrefutable evidence that I do have SLE.

    FYI, what sold me was reading my blood tests which went back as far as last November. My sed rate was off the charts at 134 and my platelets, RBC's were both on the bad side. Outside of this my energy was sapped, especially late October onwards; so when my doctor ordered the ANA I was not surprised to see the positive number which coupled with my DLE convinced the doctors that I was on the cusp if not full blown SLE.

    Also, outside of the disabling (at times) fatigue, my joints do ache in an odd way at varying times of the day.

    Forgive the wordiness, but any thoughts?

    Thanks,
    J

    PS How did you become so knowledgeable?!!!? I told my wife that you ought to be on the lecture circuit!

    I guess my rheumy (as Teriod calls them) is right
    irrefutable evidence???? this almost non existant with this disease, many of us that have it have taken years to DX ive had this crud for many years and just got DX last december, if i were to hazzard a guess, i would say the doctors dont know whats causing the protein right??, only after one of the many ana tests i took prooved positive along with high amounts of protein and hi blood pressure, peritonitis, RA,stroke and many other smaller ailments was i DX with sle lupus after fighting it for 6-7 years, after this, denial wasnt an option, it was more of a relief to know what the possible cause was

    one more thing to add, stress plays a MAJOR roll, last year after stressing myself out with two jobs and school i had a major flare which contributed to my diagnosis
    Fair Oaks California

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    WOW. saysuzie, how can one person retain so much information,Im severly impressed, it gets hard for me to remember what i have my degree in sometimes,

    My best wishes go out to Marycain, if I were you I would ask, If a moderator cant do it, who can??
    Fair Oaks California

  8. #18
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    I think you are right Teroid. Perhaps members would be willing to provide that information to only me or Conrad in order to preserve their privacy. I will do a poll sometime next week to see how the members feel about it and how they feel is the best way to provide an emergency contact!!

    Peace and Blessings
    Saysusie

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    Default Thank You Again!

    Hi SSousie,

    Geez, tha was alot of great information all of which I copied and pasted to my Word program and then printed for further study. It says it all for me and I have a follow-up visit with my rheumatologist next week. At that time I will discuss further testing options and then following the visit will let you know how I fared at the appointment.

    Once again you re a God-send, and am so glad I joined this site.

    Take good care and stay in touch. Now if I could only put on some weight.
    I am down 25 lbs from my normal weight and my waist size makes me feel like I am in the Cub scouts.

    All the best,
    John

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    Hi John;
    You are most welcome and, yes, I would really like to hear how your next visit with your rheumy goes.
    I am a big advocate of being well informed. As you continue to learn about Lupus and how it affects you (since each of us is different), what treatments are available and what symptoms they work for, what other ailments tend to tag along with Lupus and how they can be treated, etc., I believe that you will be more able to be an advocate for YOUR health care and will be able to make informed decisions with your doctor and, at the very least, know how to stand up for yourself and demand action!!
    I wish you the very best and know that we are here to help arm you with that information, to answer your questions and to provide as much support as we can.

    Peace and Blessings
    Saysusie

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