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Thread: Hi, I'm Diann from Hesperia, CA

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  1. #1
    Join Date
    Nov 2007
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    Default Hi, I'm Diann from Hesperia, CA

    and I'm going through the ordeal of finding out whether or not my 17 year old daughter has an autoimmune disease. I've been in a state of pure panic for the past two months, and completely stressed for three years now. Finally a Neurologist, Hemotologist and next the Rheumatologist on November 29.

    My daughter was very active until the age of 15. She began having extreme knee problems, was taken out of PE, then finally home schooling. First she was diagnosed with migraines/tension headaches and put on Topomax. The Topomax did indeed take the headaches completely away but within six months she was down to 84 lbs. She's 5'2" tall so she was looking anorexic. Got her off the Topomax and asked Neuro to perform some blood work. Her plateletts were low and her lymphocytes were out of whack a bit. Took her to Primary care physician with swollen lymph glands and she was put on a strong antibiotic which took down the swolen glands but was still referred to the Hematologist. He ran more blood work including an ana and everything was back to normal. Said the platelett count could have very well been low due to the Topomax which it is notorious for doing. Glad they decided to tell me eight months later. Anyway, she now she has joint pain in toes, fingers, elbows, stabbing pain in chest from time to time. No fever, no rash, no ulcers and her headaches are back. I must admit that I am more frightened than I have ever been in my life and seem to think that this is certainly a death sentence for her in the next ten/twenty years. I really could use some optimism right now because I'm going stark raving crazying in Hesperia.

    Thanks so much for reading my post and I'm so sorry that I am not more upbeat but all I can seem to do is research, write, print, panic and cry.

    Bye for now,


  2. #2
    Join Date
    Nov 2007
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    Hi Diann,

    Really sorry to hear that she's having to face all that pain. Stay positive though. A Rheumatologist can do wonders, and there are medicines for every symptom she's feeling, from what I've learned. I'm new to this whole thing as well (my fiance was diagnosed with Lupus, though a shady diagnosis without much tests it seems) but we all learn more about this as we go along. With close contact with the doctors, Lupus isn't a life-threatening concern anymore from what I've learned.

    Stay positive, and everyone here is very helpful if you have any questions. I've had a lot of mine answered. I can't stress enough how important it is for you to stay positive and confident. It will be alright. Try get your daughter not to stress either.

    Take care, and good luck! Don't worry, it'll be ok.

  3. #3
    Join Date
    Nov 2001
    Victorville, California
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    Hi Diann;
    Welcome to our family. I am in Victorville, so we are very close. I understand your fear for the health of your daughter, I went through the same emotions with my daughter.
    Many of us with Lupus suffer from Lupus Headaches/Migraines. They are very much like migraines, but do not usually respond to the same conventional treatments for migraines.
    The joint pains are a common symptom for most of us. More than 90 percent of people with SLE experience joint and/or muscle pain and these pains are usually the symptoms that send us to the doctor prior to diagnosis. The major cause of joint pain in Lupus is inflammation of the joints (arthritis) which can cause: pain, swelling, tenderness, a feeling of warmth, and fluid collection.
    The pain in and around the joints is not always due to lupus arthritis. It also can be due to other medical disorders that often co-exist with Lupus, and these include: fibromyalgia, avascular necrosis of bone, bursitis and tendonitis, other types of arthritis, infection. Inflammation of the skeletal muscle also may develop in people with Lupus. This condition is called myositis and can sometimes cause weakness and loss of strength of the extremities.
    Early treatment can significantly slow down damage to her joints and lessen the pain and stiffness. The pain in the joints (Lupus arthritis) is treated with non-steroidal anti-inflammatory drugs (NSAIDs). These medications are effective for are usually well-tolerated. They include:
    - aspirin
    - salsalate (saliscylate)
    - naproxen
    - ibuprofen
    - indomethacin

    When NSAIDs are not adequate to control the pain, doctors may prescribe antimalarial agents such as hydroxychloroquine (Plaquenil) along with the NSAIDs.
    Corticosteroids (prednisone) are used when the joints remain swollen and painful despite the other treatment mentioned. Also, imunosuppressive medications are also effective for inflammatory arthritis. However, these medications are also used for other symptoms of Lupus and also help with the arthritic pain and inflammation. These drugs include:
    - cyclophosphamide
    - azathioprine
    - methotrexate.

    Please do not think of this as a death sentence for your daughter. Lupus can be a severe and life-threatening disease sometimes. However, most children with lupus will do very well. The prognosis of lupus depends on the severity of the internal organ involvement, if any. Even if there is significant internal organ involvement, aggressive treatment has made the symptoms manageable. Children, like your daughter, with arthritis and headaches as the primary symptoms, have found that with early treatment, the symptoms can be easily controlled.
    You will probably have to make some adjustments in lifestyle in order to help her to manage this disease, but she can live a relatively normal lifestyle for many, many, many years if she begins treatment and makes those adjustments now.
    We are here to help you in any way that we can and to provide you with information, answers, comfort and support. You are not alone!

    Peace and Blessings
    Look For The Good and Praise It!

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