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    Default Confused new member

    Hello, I'm 40 years old and was diagnosed by my GP on December 22, 06 with Lupus. I had to wait til the end of Januray to see my Rhuematologist, at which time he did not want to jump to a hasty diagnosis of Lupus. He said although I have ample symptoms of the disease with positive lab test that support the diagnosis, he also said I have lab results that clearly point away from Lupus. He gave me a pamplet on Lupus and a pamplet on Pseaudogout, he says he ruled out fibromyalgia. My need for help is this, I have a positive ANA and a very elevated Single Stranded anti-DNA, my double stranded DNA was not elevated. My sed rate was not elevated either. Anti-SM, Anti RNP, Ch-50, and RA were all normal or negative. My many physical symptoms are joint pain (elbows, knees and fingers), low grade fever, sores in nose, hair loss, rashes, reaction to the sun, severe fatigue, muscle weakness and tenderness. Has anyone else experienced an elevated single stranded DNA test? Why is this test less important in the clinical diagnosis problem? He did start me on a low dose steroid treatment and I showed a small improvedment in the tendonitis, but since decreasing my dose it is coming back again. Just not sure what I should do next. Any suggestions is greatly appreciated. I see the doctor again next tuesday, he also have me on two different muscle relaxers, one that has really helped me get a good night sleep (flexeril).
    Kimberly Aird

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    Lupus is not easily diagnosed and cannot be diagnosed by blood tests alone. There is no single laboratory test that can determine whether a person has lupus or not. One of the insidious things about Lupus is that its symptoms are so similar to many other diseases, some more serious and some less serious. There needs to be at least 4 of 11 criteria present in order to make a Lupus diagnosis (some say that the number of criteria is now 13). But, here are the 11 criteria:
    Criterion Definition
    Malar Rash................... Rash over the cheeks
    Discoid Rash ................Red raised patches
    Photosensitivity ............Reaction to sunlight, resulting in the development of or increase in skin rash
    Oral Ulcers...................Ulcers in the nose or mouth, usually painless
    Arthritis........................Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)
    Serositis......................Pleuritis or pericarditis (inflammation of the lining of the lung or heart)
    Renal Disorder.............Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)
    Neurologic Disorder ......Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects
    Hematologic Disorder.......Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.
    Antinuclear Antibody..........Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.
    Immunologic Disorder....... Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).
    Again, you must have at least four of these eleven criteria.
    In reading your symptoms, it appears that you do have four of the eleven criteria (

    Most people with lupus have a positive ANA, but so do many healthy people. A single stranded DNA is commonly positive (even in healthy people). However, testing single stranded DNA as it relates to Lupus has become increasingly important because researchers have discovered that antibodies produced by individuals with systemic lupus erythematosus (SLE) actually change the shape of their DNA molecules, to produce a tighter bond between antibodies and DNA. Binding between lupus antibodies and DNA molecules is the first step in a series of immunological reactions that can cause serious tissue damage in lupus patients. I think that this test is not as imperative when attempting to say yes or not to Lupus because this binding is a fairly recent discovery and it does not occur in all lupus patients.
    The human body produces millions of different types of protein molecules called antibodies, each customized to bind to one specific invading bacteria or virus and hold it prisoner until it is engulfed and destroyed by white blood cells. Some individuals with lupus produce a unique type of antibody that sees DNA as the ‘enemy. DNA is a component of all living organisms. It is a complex molecule containing the genetic code that determines every cell’s structure and function. Everyone has small amounts of antibodies that bind with DNA but, these anti-DNA antibodies are different—both in the extreme level of activity directed against DNA molecules and in the active binding mechanism itself. In severe cases, these abnormal antibodies bind to sections of DNA and become lodged in the patient’s kidneys where they trigger inflammatory reactions by white blood cells that can lead to kidney failure. This type of protein binding is an active process and the antibodies actually force structural changes in target molecules (like DNA) to produce a binding site or strengthen an existing bond.
    In recent experiments, researchers used electrophoretic assays to monitor the interaction between anti-DNA antibodies and segments of synthesized DNA with a common “hairpin loop” structure. In this type of structure, a DNA double helix was connected at one end with a single strand of DNA. They discovered that lupus antibodies bind to the single strand of DNA and then somehow “melt” the adjacent double-strand segment, producing a larger single-strand bubble capable of sustaining a much stronger bond with the antibody. Researchers hope to identify the exact structural element or feature of DNA that is targeted by lupus antibodies and, hopefully, may be able to synthesize a new drug that can block anti-DNA antibodies.
    I hope that I've answered your questions, if you need anything more, please let me know!

    Peace and Blessings
    Saysusie

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    Diagnosis can be a really frustrating time. I have always had a negative anti-ds DNA. In fact, I probably only fir 3 of the 11 clearly, but my Lupus Nephritis is so obvious that it is clear it is Lupus.

    I hope that things get cleared up for you. You know, any good doctor does not get offended by a second opinion. On a side note, my iprevious internist diagnosed me with Sjogren's about 10 years ago (7 years before Lupus). A rheumatologist "took away" that diagnosis shortly after, but I still havg out on the fringe of whether or not I have Sjogrens and we keep an eye on it. Just another example of how GPs and Rheumies operate differently and keep patients guessing!

    I will be thinking of you.......
    Missy

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    It is frustrating. I had an inconclusive ANA, then positive, then negative. Along with that, my symptoms and a few other things, the Rhuemy determined that I did have Lupus. They just want to be sure. They ran a total of 39 tests on my blood. (9vials of blood) Everything from TB-hepatitis-HIV was tested for.

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    Quote Originally Posted by Saysusie
    Lupus is not easily diagnosed and cannot be diagnosed by blood tests alone. There is no single laboratory test that can determine whether a person has lupus or not. One of the insidious things about Lupus is that its symptoms are so similar to many other diseases, some more serious and some less serious. There needs to be at least 4 of 11 criteria present in order to make a Lupus diagnosis (some say that the number of criteria is now 13). But, here are the 11 criteria:
    Criterion Definition
    Malar Rash................... Rash over the cheeks
    Discoid Rash ................Red raised patches
    Photosensitivity ............Reaction to sunlight, resulting in the development of or increase in skin rash
    Oral Ulcers...................Ulcers in the nose or mouth, usually painless
    Arthritis........................Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)
    Serositis......................Pleuritis or pericarditis (inflammation of the lining of the lung or heart)
    Renal Disorder.............Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)
    Neurologic Disorder ......Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects
    Hematologic Disorder.......Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.
    Antinuclear Antibody..........Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.
    Immunologic Disorder....... Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).
    Again, you must have at least four of these eleven criteria.
    In reading your symptoms, it appears that you do have four of the eleven criteria (

    Most people with lupus have a positive ANA, but so do many healthy people. A single stranded DNA is commonly positive (even in healthy people). However, testing single stranded DNA as it relates to Lupus has become increasingly important because researchers have discovered that antibodies produced by individuals with systemic lupus erythematosus (SLE) actually change the shape of their DNA molecules, to produce a tighter bond between antibodies and DNA. Binding between lupus antibodies and DNA molecules is the first step in a series of immunological reactions that can cause serious tissue damage in lupus patients. I think that this test is not as imperative when attempting to say yes or not to Lupus because this binding is a fairly recent discovery and it does not occur in all lupus patients.
    The human body produces millions of different types of protein molecules called antibodies, each customized to bind to one specific invading bacteria or virus and hold it prisoner until it is engulfed and destroyed by white blood cells. Some individuals with lupus produce a unique type of antibody that sees DNA as the ‘enemy. DNA is a component of all living organisms. It is a complex molecule containing the genetic code that determines every cell’s structure and function. Everyone has small amounts of antibodies that bind with DNA but, these anti-DNA antibodies are different—both in the extreme level of activity directed against DNA molecules and in the active binding mechanism itself. In severe cases, these abnormal antibodies bind to sections of DNA and become lodged in the patient’s kidneys where they trigger inflammatory reactions by white blood cells that can lead to kidney failure. This type of protein binding is an active process and the antibodies actually force structural changes in target molecules (like DNA) to produce a binding site or strengthen an existing bond.
    In recent experiments, researchers used electrophoretic assays to monitor the interaction between anti-DNA antibodies and segments of synthesized DNA with a common “hairpin loop” structure. In this type of structure, a DNA double helix was connected at one end with a single strand of DNA. They discovered that lupus antibodies bind to the single strand of DNA and then somehow “melt” the adjacent double-strand segment, producing a larger single-strand bubble capable of sustaining a much stronger bond with the antibody. Researchers hope to identify the exact structural element or feature of DNA that is targeted by lupus antibodies and, hopefully, may be able to synthesize a new drug that can block anti-DNA antibodies.
    I hope that I've answered your questions, if you need anything more, please let me know!

    Peace and Blessings
    Saysusie
    I guess I'm still in the early diagnosis stage. For every test that my GP did think to order, there was one that she didn't so my Rhuemy did order a C3&4, Syphlis test, another UA and x-rays of my hands and wrist to check for calcifications in my joint. I had my first ever migrane over the new year holiday and was hospitalized for two days, they told me headaches are not lupus related, however I have read differing stories about that and found it documented in books, in my case I feel it is related because it came on after the positive symptoms and tests. Cognatively speaking I'm always feeling slow, have problems retaining new information, such as phone numbers, pin numbers etc. I am anemic and have been a kidney stone producer for 23 years now, so my kidney's are already damaged, in the last 7 years the stones have become a chronic issue. My kidney function remains great and I show no signs of nephritis that I know of.

    Thank you so much for your answers, it is nice to have a place to go to read about others and get real stories of the daily battle we all face.
    Kimberly Aird

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    Hi Kimberley,

    I'm a "newbie" to this forum too. I'm actually blown away by the amount of newbies since I joined the forum only a few days ago. This illness is freaky that is affects just so many people. Before I was diagnosed I hadn't heard of the disease, but now that I have it seems to be everywhere.

    I say I was diagnosed..... but really I haven't officially been diagnosed. My immunoligist says he's 90-odd percent positive, but my doctor isn't so sure. My ANA's are also sky high and I have all the symptoms, but my doctors says it may be another auto-immune disease as the specific key in my blood work was not there.

    I probably sound very vague about my tests - and I am. I too find it awfully confusing.

    ....... I've just read Saysusie's response. My doctor claims that there is a specific "thing" in the blood work that says "yes, she has lupis". But I have read articles that says that lupis can hide and isn't always diagnosed by blood work. No wonder we're so confused!

    Reading through Saysusie's list, I also have four criteria.

    I'm sorry, I probably haven't helped you in this post at all! But at least you know you're not alone!

    cheers
    LJ

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    The Lupus Migraine is VERY real and there are too many of us who suffer with it. I, myself, have frequesnt Lupus migraines. Central Nervous System involvement in Lupus is quite common. People with lupus do often experience signs associated with the body's nervous system, such as: headaches, confusion, difficulty with concentration, fatigue and occasional seizures or strokes!
    People with lupus can experience headaches which are unrelated to their lupus, i.e., sinus headache, tension headache and bone spurs from osteoarthritis. However, approximately 20 percent of patients with SLE experience severe headaches which are, indeeed, related to the disease and these are known as lupus headaches.
    The lupus headache phenomenon is very similar to migraine and may be seen more often in people who also have Raynaud's phenomenon.
    SPECT scans indicate abnormalities in blood vessel tone or the ability of a vessel to dilate or constrict. A Lupus headache is treated like tension headaches or like a migraine, although corticosteroids are occasionally useful. It is this migrainous-type headache which may be a manifestation of underlying lupus.
    The common Migraine has generally been divided into two types, common and classic migraine. Common migraines occur as a throbbing pain on one side or occasionally both sides of the head, affecting women more often than men. They may last for hours or days. Classic migraine has similar features but is associated with nausea. The aura may include a variety of symptoms and, in particular, includes visual symptoms such as bright lights, lines, patterns or other distortions. It is the classic pattern of migraine which seems to have a specific association with lupus.
    Unlike the more typical pattern of more classic migraine, lupus patients with migrainous headaches have found that their headaches typically have begun in association with the activity of their lupus. Researchers found an association with changes in the circulation of the back part of the brain where the visual part of the cortex is located. Some patients with SLE and migrainous headaches have also experienced visual hallucinations, typical of what have been called “fortification spectres” (jagged lines that resemble an aerial view of ancient fortifications). Other patients reported flashing white lights in their visual field. Some SLE patients stated that their illness began with a migrainous headaches and was followed, for several months, by all other organ system involvement due to lupus. In several cases, the frequency and severity of the pattern of migrainous headaches in SLE resolved as other features of the disease, including arthritis, pleuritis and rashes improved with treatment.
    Lupus headaches are often not relieved by treatments for common migraines. The important point to remember is that when headaches are intractable and not relieved by the usual pain relievers, or when they involve specific hallucinations or changes such as fleeting blindness associated with migrainous phenomenon, they most likely represent a manifestation of the underlying disease process. Treatment with the usual medications for lupus including steroids, non-steroidal anti-inflammatory medications, and Plaquenil, in addition to the use of drugs like nifedipine, which can dilate the arteries, are usually helpful because they lesson the symptoms of the underlying disease.
    In any event, the important thing to know is that the Lupus Migraines are very real and that they are related to the disease. However, it is important to distinguish the Lupus migraine from a common migraine which can have no relationship whatsoever to the underlying disease!!

    Peace and Blessings
    Saysusie

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    Quote Originally Posted by wombat
    Hi Kimberley,

    I'm a "newbie" to this forum too. I'm actually blown away by the amount of newbies since I joined the forum only a few days ago. This illness is freaky that is affects just so many people. Before I was diagnosed I hadn't heard of the disease, but now that I have it seems to be everywhere.

    I say I was diagnosed..... but really I haven't officially been diagnosed. My immunoligist says he's 90-odd percent positive, but my doctor isn't so sure. My ANA's are also sky high and I have all the symptoms, but my doctors says it may be another auto-immune disease as the specific key in my blood work was not there.

    I probably sound very vague about my tests - and I am. I too find it awfully confusing.

    ....... I've just read Saysusie's response. My doctor claims that there is a specific "thing" in the blood work that says "yes, she has lupis". But I have read articles that says that lupis can hide and isn't always diagnosed by blood work. No wonder we're so confused!

    Reading through Saysusie's list, I also have four criteria.

    I'm sorry, I probably haven't helped you in this post at all! But at least you know you're not alone!

    cheers
    LJ
    Thankyou for sharing your story, that is what I liked about this site. I got to read what others are going thru and found that it was not so different than I. It has helped very much knowing that I'm not alone and the things that I'm confused about are not uncommon.
    Kimberly Aird

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