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Thread: Opinions, anyone?

  1. #1
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    Default Opinions, anyone?

    First of all, I should say that I'm a nurse so the questions I'm asking may seem a bit odd. I should know this stuff, right? But I don't. And I'm worried. I have been battling fatigue for several years and just chalked it up to not enough sleep. Except that to be honest, even if I slept 10 hours I still had trouble keeping my eyes open. Sometimes just raising my arms above my head seemed like an impossible chore. Next, I developed a sensitivity to the sun. A simple car ride to the grocery store with the car window down and I would be covered in a blotchy red rash. I started noticing a red rash on my face, too-usually when I was at my most tired. During my last pregnancy I developed toxemia and delivered my baby prematurely. Thank God he was a healthy baby. Lately I have had pain in my joints-mostly my knees and hands. It's gotten so bad that pumping up a blood pressure cuff is almost impossible and I find myself holding my pens or silverware differently. I had some blood work done about two years ago during a physical and I found that I was borderline anemic and had an elevated ANA. My doctor doesn't seem concerned about these issues. I really don't know enough about lupus to say one way or the other but I do know that all of these things can be warning signs of lupus. What I want to know is if there is a difinitive test for lupus? Is there a way to be certain that I don't have lupus? Am I being paranoid? Any words of wisdom would be greatly appreciated.
    BrendaV

  2. #2
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    Default Welcome BrendaV

    I am by no means an expert on Lupus, But I did want to give you some information that I have learned over the last few years. I, like you, am a nurse and when all this started I knew very little about Lupus. When I was diagnosed the first time (long story) my wonderful doctor (Internist) told me that I would probably know way more about Lupus than he ever would because I had personal stakes in it and that was ok. Well back to the subject at hand. Just about everything I have ever read about Lupus says that there is NOT one definitve test to say for sure that it is absolutely Lupus. The American College of Rheumatology has criteria that aid in the diagnosos and if you look at some of Saysusie's posts(the moderator) she is very good about explaining this among other things related to Lupus. Now the symptoms you described sound very suspicious of Lupus and if I were you I would insist that your GP refer to a Rheumatologist. They specialize in this and are your best bet for help with finding out what is wrong. Just to warn you also that Lupus has a nick-name "the Great Imitator" because many of its symptoms are similar to other diseases so it can be extremely hard to diagnose. It may take a while to get answers. So don't give up. You know your body better than anyone else and you need to be your own advocate and insist that they find out what is wrong. Well I hope this helps. Good Luck and keep us posted.

    Angie

  3. #3
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    Default

    Have they checked your sed rate? Done and anti-double- stranded DNA test? I don't think there is ONE specific test, but a combination of tests that can offer some guidance... Are you seing a Rheumatologist, or just a PCP?

    I hope that they can get you figured out soon!
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    Default

    Hey, Brenda, does the red rash on your face go across your nose as well as your checks? if so, it could be a malar or butterfly rash. Unfortunately, there's no definite test for lupus, The ACR lists 14 criteria which are considered indicative of lupus, and if you have 4 or more, you can be diagnosed with lupus. Malar rash, mouth ulcers, photosensitivity, and blood abnormalities are all criteria. But there are many autoimmune diseases which can cause similar symptoms, so a specialist may be your best bet to get a diagnosis.

  5. #5
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    Default

    Boy your symptoms sound very much like mine when SLE came on. You're doing the right thing by taking it upon yourself to research and try out this theory that it might be lupus. Yes, do find a good rheumatologist. Do you live near a teaching hospital? That's one good resource. Have you ever needed to see another type of specialist and found he/she was really great, if so get a referral from his office. There are blood tests that can point toward it and once diagnosed, IF you are diagnosed, then you will get medication (like antimalarials) that help you. With SLE, it's all in the management of the illness to live successfully with it. Congratulations on your baby.
    i love the smell of doughnuts in the morning. it's the smell of... victory!

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