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Thread: Borderline Lupus?

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    Default Borderline Lupus?

    Hi All,

    I'm new. Last summer I had a slightly positive ANA, but with tons of Lupus symptoms. I will get these symptoms in waves, or flare ups. They are extreme fatigue, muscle weakness, hair loss, eye sensitivity to sunlight, white fingers when cold, red rash on my scalp, pain in the lungs when breathing in, random sores on the corners of my mouth, headaches, joint pain, cognitive issues and depression and weight fluctuations. The rheumetologist last summer did a bunch of blood work and it all looked normal, except for protein in my urine. He didn't really say that I had lupus, but I feel like I have at least a mild case of it. I have been looking online and have found that there might be such a thing as borderline lupus. I just went back and had more blood work done. This time it was all good except for elevated chloride in my blood. The doctor did not order a new ANA test and he didn't run the regular lupus blood tests. Why didn't he? I feel like he doesn't feel that he needs to worry about me, or something. I feel like I have typical flare ups. They are manageable, but they ARE affecting my daily life.

    So my question is: is there such a thing as borderline lupus, or mild lupus? Is my doctor a lazy bum? I just called the nephrologist about the protein and chloride elevation levels. I'm waiting to hear back from them. This is so annoying. I KNOW something is going on with my body, and I would be just fine with a "borderline" or "mild" diagnosis.

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    Default

    Hi, welcome,
    First let me saying that in my experience one or two rounds of tests are never conclusive. In one of the stickies you should find a list of common symptoms. Are you currently seeing your primary care physician or a rheumatologist. You need to see a rheumatologist that is familiar with Lupus. Most doctors are not informed enough to make a firm diagnosis.

    Good Luck and keep good thoughts in your mind.

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    Saysusie (04-19-2014)

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    Hi aimtoothpaste (love that -lol);

    In answer to your question, YES there is such a thing as Mild Lupus. I, at this point in my life, have been downgraded to Mild Lupus (however, I have a sever case of Fibromyalgia). For most of us with Mild Lupus, we are able to manage our disease without having to take a lot of medications.
    It is quite apparent that your current physician does not have a lot of knowledge about Lupus and its myriad of forms and how it affects each of us differently. So, it might be in your best interest to start looking for a rheumatologist who is up to date on Lupus and its treatments. If this is too difficult to do, then I suggest that you educate yourself about Lupus (and/or auto-immune - connective tissue diseases) and that you INSIST that you doctor continue to run tests, learn about these issues, and provide appropriate treatment.
    I am a strong believer that we must be our own health advocates and that we must make informed decisions about our health care. Those decisions include mandating that your physician do what is best for your health and that he/she do everything that they can to provide you with answers and treatment.
    You are not crazy! Your symptoms definitely sound like those of some type of auto-immune issue (of which there are more than 60) and, as Nonna so aptly pointed out, one round of tests is not enough to confirm or deny the presence of an auto-immune disorder.
    I wish you the very best and please know that we are here for you.

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

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