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Thread: My Wife

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    Default My Wife

    Hello everyone,

    I am writing this for my wife, as she was just diagnosed with Lupus today and is very upset and not wanting to do any research right now. Her and I are both in shock, but I know we need to learn about this disease.

    Here is my story.

    My wife Liz is 26 years old, she has been having knee and hip pain for a while now, so she decided to go to the Doctor and get it checked out. He did the full blood workup and urine tests on her. We went in to get the results after a couple of weeks and he said everything came back normal. So we went on with our lives. Then all of a sudden we get a call from the Doctors office saying he wants to see her about one of her test results that just came back. Confused, because we thought everything was normal, Liz went in today and got the diagnosis. He wrote down the description for her on paper and it reads as this: (Vasculitis) SLE Lupus / systemic lupus erythematosus.

    He explained to her what the disease was, and then told her there is nothing that can be done and to come back if she starts to feel worse.

    To me this doesn't sound right. Should we not be seeing a specialist about how to treat this? Sitting and waiting for it to get worse does not sound like the right plan of attack to me.

    I have also read that Lupus can be misdiagnosed.. Could this have happened?

    Should we get a second opinion?

    As you can see, we/I have a lot of questions.. Sorry about that. We just want to know what to do from this point, and I thought the folks on this forum would know what we should do!

    Thanks very much for your input.

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    Hello Icann

    One word. Insane..who is this doctor and does he have a certificate to practice Rheumatology or is this your primary doctor who diagnosed her. Maybe he feels he can't do anything but he should have referred her to a Rheumatologist.

    Did he explain why the diagnose for SLE...meeting the ACR criteria for diagnose...

    American College of Rheumatology criteria for a lupus diagnosis
    The American College of Rheumatology (ACR) has developed clinical and laboratory criteria to help physicians diagnose and classify lupus. If you have four of the 11 criteria at one time or individually over time, you probably have lupus. Your doctor may also consider the diagnosis of lupus even if you have fewer than four of these signs and symptoms. The criteria identified by the ACR include:

    • Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
    • Scaly rash, called a discoid rash, which appears as raised, scaly patches
    • Sun-related rash, which appears after exposure to sunlight
    • Mouth sores, which are usually painless
    • Joint pain and swelling that occurs in two or more joints
    • Swelling of the linings around the lungs or the heart
    • Kidney disease
    • A neurological disorder, such as seizures or psychosis
    • Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)
    • Positive anti-nuclear antibody tests, which indicate that you may have an autoimmune disease
    • Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test

    Laboratory tests
    Your doctor may order blood and urine tests to determine your diagnosis, including:

    • Complete blood count. This test measures the number of red blood cells, white blood cells and platelets as well as the amount of hemoglobin, a protein in red blood cells. Results may indicate you have anemia, which commonly occurs in lupus. A low white blood cell or platelet count may occur in lupus as well.
    • Erythrocyte sedimentation rate. This blood test determines the rate at which red blood cells settle to the bottom of a tube in an hour. A faster than normal rate may indicate a systemic disease, such as lupus. The sedimentation rate isn't specific for any one disease, but it may be elevated if you have lupus, another inflammatory condition or an infection.
    • Kidney and liver assessment. Blood tests can assess how well your kidneys and liver are functioning. Lupus can affect these organs.
    • Urinalysis. An examination of a sample of your urine may show an increased protein level or red blood cells in the urine, which may occur if lupus has affected your kidneys.
    • Antinuclear antibody (ANA) test. A positive test for the presence of these antibodies — produced by your immune system — indicates a stimulated immune system, which is common in lupus and other autoimmune diseases. A positive ANA doesn't always mean that you have lupus, however. ANA levels can be elevated if you have an infection or if you're taking certain medications. If you test positive for ANA, your doctor may advise more-specific antibody testing and refer you to a rheumatologist, a doctor who specializes in musculoskeletal and autoimmune disorders such as arthritis or lupus.
    • Chest X-ray. An image of your chest may reveal abnormal shadows that suggest fluid or inflammation in your lungs. It may also show an enlarged heart as a result of a buildup of fluid within the pericardium (pericardial effusion).
    • Electrocardiogram (ECG). This test measures the pattern of electrical impulses generated in your heart. It can help identify irregular rhythms or damage.
    • Syphilis test. A false-positive result on a syphilis test can indicate anti-phospholipid antibodies in your blood, another indication of lupus.The presence of anti-phospholipid antibodies has been associated with an increased risk of blood clots, strokes and recurrent miscarriages.



    Did he rule out other diseases that mimick SLE? Rheumatoid Artritis? Sjogren's? Fibromyalgia?

    Did he rule in, rule out what type of vasculitis it is? Did he prescribed steroids for vasculitis? Any prescription for Plaquenil....that is usually the first line of defense for Lupus. Not even any NSAIDS?

    The questions above are the things you need to be asking the doctor.

    The signs and symptoms of vasculitis resemble those of many conditions, which can make a definite diagnosis difficult.


    • Blood tests. If your doctor suspects vasculitis, he or she may order a blood test that checks your erythrocyte sedimentation rate — commonly referred to as the sed rate. This test measures how quickly red blood cells fall to the bottom of a tube of blood. Red cells that drop rapidly may indicate inflammation in your body.
      You also may have a test that measures C-reactive protein (CRP), a substance produced by your liver in response to inflammation.
      Your doctor may also check the number of red blood cells for anemia and platelets (thrombocytes) in your blood. Platelets are colorless blood cells that help stop blood loss when you're injured. Some types of vasculitis result in an unusually high or low number of these cells.
      Your doctor may also check to see if you have a high white blood cell count, which can signify an infection or inflammation.
      In addition, your doctor may check your blood for anti-neutrophil cytoplasmic antibodies (ANCAs) and other antibodies, such as rheumatoid factor (RF) and antinuclear antibody (ANA). ANCA can indicate a diagnosis of Wegener's granulomatosis or microscopic polyangiitis. RF and ANA elevations can be indications of an associated rheumatoid arthritis or connective tissue disease.
    • Imaging studies. Your doctor may be able to determine whether larger arteries, such as the aorta and its branches, are involved through the use of noninvasive imaging techniques. These include ultrasound, computerized tomography (CT) and magnetic resonance imaging (MRI).
      In some cases, though, you may need a more invasive X-ray test called an angiogram. During this procedure, a catheter, resembling a thin straw, is inserted into a large artery or vein. A special dye (contrast medium) is then injected into the catheter, and X-rays are taken as the dye fills these arteries or veins. The outlines of your blood vessels are visible on the resulting X-rays.
    • Biopsy. Although blood tests and imaging studies can provide your doctor with useful information, one of the best ways to confirm a diagnosis of vasculitis is by taking a small sample (biopsy) of the affected blood vessel. The procedure is performed on an outpatient basis under local anesthesia, usually with very little discomfort or scarring.
      The sample is examined for signs of inflammation under a microscope in a laboratory. If there is evidence of scarring, it implies that the condition has been chronic, or long-standing. Treatment may not be as effective in these cases, because the damage has been done and may not be reversible.
    • Urine test. This test may detect abnormalities, such as red blood cells and increased amounts of protein, in your urine that often indicate a medical problem. If the kidneys are involved, your prognosis tends to be poorer.




    Vasculitits does not equate to SLE...

    He should atleast rule out other diseases and treat her symptoms..

    The four basic rules when seeking a diagnose...
    1. Bring support to your appointments because it is hard to stay focused with all the information.
    2. Have a health advocate who will fight for you and not just have empathy.
    3. Get a second opinion.
    4. Become an expert on you illness.

    Keep looking for wellness...hugs,
    OLuwa
    Last edited by Oluwa; 03-17-2009 at 07:00 PM.
    I have Lupus. So *^#@! what.

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    wow thanks for the fantastic reply..

    I know she did have the ANA test, the Doc. told her it was positive. I am not sure what other tests were done, but I know he did a lot of bloodwork on her. I also forgot to mention in my first post that she has always had very cold hands and feet ever since she was young, Can Lupus cause this?

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    You're welcome, Icann25....

    Raynauds phenomenon causes cold hands, cold feet..bluish tint? Stone white? Very painful?

    Raynaud's is a symptom of an underlying condition such as scleroderma, lupus or rheumatoid arthritis...

    Hypothyroidism....?

    Poor circulation...?

    Not eating healthy..dieting...?

    Feeling cold, nights sweats, low body temperature are common symptoms of those with Lupus.

    I am not diagnosed with any of the above. I have SLE, Sjogrens, RLS, GERD, Fibro and a few other miscellaneous...gastroparesis, dysphagia....and my hands and feet get cold. Times I find no warmth even while buried under a down comforter..


    Hope this helps to give you some direction to where to search...

    Also note..ANA may be positive in healthy individuals or be induced transiently during acute illness or with infection, and by certain medication. It may also be positive in many other autoimmune diseases including rheumatoid arthritis and autoimmune thyroid disease. ANA results should always be interpreted in clinical context. A positive ANA is only a part of the puzzle in diagnosing Lupus.

    Keep looking for wellness..hugs.
    Love,
    Oluwa
    Last edited by Oluwa; 03-17-2009 at 10:09 PM.
    I have Lupus. So *^#@! what.

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    oluwa pretty much covered it... but i will just add that your wife should immediately schedule an appointment with a rheumatologist, and bring copies of all the lab work with her to the appointment. the rheumatologist will probably order more lab work as well. i originally went to my general practitioner when i first started experiencing symptoms and he misdiagnosed me. my rheumatologist diagnosed me with SLE. and now i'm in the process of seeking out yet another opinion, even though there's just about no doubt in my mind that my rheumatologist is correct after all my research and lab results. i'm mostly just seeking another opinion in regards to treatment, and to ease my mind further.

    tell your wife to join this message board because the people here are really great and have really helped me understand what i'm going through better. i was in the same position as she is too. i'm only 23, and i was so upset and depressed after finding out i had lupus and i didn't want to research anything, mostly because i was afraid of what i would find out. but i'm so glad i found these message boards.
    23 year old clinical psychology grad student with lupus (SLE) and nephritis
    Medications: CellCept, Plaquenil, Prednisone, Lisinopril, Lipitor, OsCal+D

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    Thanks for the advice everyone. I would like to take her to see a rheumatologist as the next step, however, I don't know how to find one. I live in a small town in Canada and when I look up rheumatologist in the phone book there is nothing, I am not sure where else to look. Should we maybe just try another doctor and tell him that she was recently diagnosed with SLE from another doctor and we want a second opinion? I am just not sure what to do from this point.

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    hi Icann,

    so sorry to hear about your young wife. this is an initially devastating diagnosis, and i know she is very frightened. Tasha gave great advise to join this forum. there is so much knowledge here, and i continue to learn something each day. Also, so many people have found different ways to address the many symptoms, and provide ways to get relief from these symptoms.

    of course, as she always does, Oluwa provided you with a wealth of information on lab tests, and diagnosis. she is a cherished member of the forum.

    concerning the dr. you need to find a "good" rheumatologist. Many people on the forum have been able to get into hospitals/clinics who specialize in lupus and other autoimmune diseases. If you could find one (i know of one in new york), it would probably be worth your trip to a medical facility for diagnosis. I went to the Mayo clinic, they then worked with my local dr. on treatment. Also, go online to lupus foundation of america web site, and search for local chapters.....they often have info on medical facilities in various areas.

    you need to find a rheumy.....and a good one....if you don't get good vibes from the dr., then find another one. this dr. search is probably the most difficult part of life with lupus. there are so many on the forum who , after many years, still have not found a good dr.

    your wife is very luck to have you.....thank you for being her advocate. lupus diagnosis is devastating, but she can learn to live with the disease.....especially with you by her side. and yes, many people start out with a positive diagnosis, then it is changed (even years later). However, remember, the lab tests can vary depending on medication and whether or not a flare is going on.

    please call on us for anything...there are so many people here who can help. I don't know what part of canada you live in, but i know we have some members from canada.....maybe you all live close.
    Phyllis

    share a smile today

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    Welcome Icann,
    What is the largest city near you? Even if you have to travel it would be best to find a rheumatologist. I have to travel 4 hours to see the doctor and I live in Texas.

    http://www.lupus.org This is the link to the Lupus of America site. I don't think they will recommend a doctor but might tell you where one is at near you.


    Sitting on the beach drinking lemonade.
    Fair wind and following seas.
    David

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    Hello Icann25,

    Welcome to our group. I see you've already been welcomed, and have recieved solid advice that I can't really add to from other members. I just want to tell you that Lupus can be controlled, and many, many people not only survive, but thrive despite the disease. It's by no means an end. I hope you can find the answers you need in order to help your wife treat this. Your coming here in support of her is a rare gift that many spouses or significant others cannot, or will not do. Your support and understanding will go a very long way towards helping her cope with all of this. Once again, welcome.

    Rob
    Last edited by rob; 03-18-2009 at 10:25 AM.

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    Thank you everyone for the very good advice.

    We live in Saskatchewan, The middle of Canada, And there is a doctor shortage here, and what medical care we do have is not great. That is one of the reasons we are so scared. Also, the thing that scares us the most is fear of the unknown. We don't know enough about this disease to not be scared. We are reading things about hair loss, kidney failure, seizures, and even death. Sounds extremely scary. We are going to try and see another doctor this weekend and see if they will run the tests again, but we dont really know what to ask for to get a definite "yes you have lupus" and be able to believe it.

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