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Thread: Has anyone on here been diagnosed with Lupus without a positive ana blood test?

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    Default Has anyone on here been diagnosed with Lupus without a positive ana blood test?

    Has anyone on here ever been diagnosed with Lupus without a positive ana blood test? If so, how were you diagnosed and what was your symptoms?

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    Yes, it is possible to be diagnosed without a positive Ana. Just like all those with positive Ana the doctors must go through and discount everything else that could be causing your illness. It will take time and they may possibly begins another answer along the way. If they dont and you meed the criteria for lupus, it is possible to get the diagnosis without ever having been Ana positive. Remember this as well... Our meds can change our Ana test from positive to negative which is why we say that lupus symptoms and tests are based on a culmulative scale. They don't all have to be there at the same time
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    I have had numerous blood tests over the last few years and my ANA has always been negative, I just was diagnosed last week, my symptoms are a red patchy rash on my face that lasts for weeks, arthritis, sores in my nose and mouth that lasts for weeks, fatigue, and a whole bunch of other stuff, There is no "one test" that will tell you have lupus, if your ana is negative your doctor will take in account all of your symptoms and the results of all your tests and will make a diagnosis, most AI diseases have the same symptoms, but some are good indicators to tell them where to start, It took almost three years for me to get a diagnosis, but sadly this is not uncommon at all, I am 43 and have had symptoms as far back as I can remember.

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    Wow. Thank you for replying. My Rheumi told me that most other docs would have told me that I have lupus, but she feels strongly about waiting for the blood to show. I had one positive ana and three negative. She scared me this week when she said that. She really confused me. I have had symptoms for 16 months now and was diagnosed with raynauds and fibro 16 months ago. At times I have extreme weakness in arms and legs, severe leg pain, electrical pains throughout body, low grade fevers at least once a week with severe headaches, I had a ibad rash on neck and face that lasted 4 weeks until I got steroid cream, they though it was lupus related, MAJOR brain fog as they call it. That is what bothers me the most. I had MRI done and they found a few lesions they believe could be from the lupus. The results said they could be from migraines or ischemia, but neurologist said they could be lupus related. Oh yeah, I had 4 different type of docs tell me I have the butterfly rash too. But my rheumi says I am just on a watch and see.

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    Ronnie, our stories are very similar, I know it is very frustrating, keep a log of all your symptoms, give them to your doctor, If you feel your doctor isn't doing enough get another one, I seen three rheumi's until I got a diagnosis, your not the only one this has happened to, this is very common, like tgal said they have to rule out everything else first, it is a process of elimination, you will want them to be right, you don't want to be treated for something you don't have. Take care -Gary

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    It took me about 5 years to get a diagnosis and my ANA has only every been "slightly elevated," never a true positive. Lupus and most other AI diseases are diagnoses of elimination... meaning, as others have said, that they have to rule out all other possibilities before slapping a lupus Dx on you. And even then, they can "take it back," change it, adjust it, add to it.. etc, it's ever-changing, especially because there's still so much unknown about AI diseases.

    I agree with the suggestion of keeping some kind of journal of your symptoms, this is very important in helping you remember what kinds of things you're experiencing day-to-day and to start to see patterns if they're there. Also, if you're having "brain fog" issues, it helps to have it written down so you don't have to worry about forgetting something important once you're there with the doc.

    Also, yes, absolutely, undoubtedly, the best advice I can give you is to be your own advocate. If you don't feel like your current rheumatologist is taking you seriously, get a new one. Just because they think it's best to "wait and see," doesn't mean it's acceptable to you to suffer with your symptoms in the meantime. Whether or not she starts you on meds specifically for lupus or some other med to help alleviate your current symptoms, something should be done and you shouldn't be pacified by "oh let's wait." It's very easy to accept what the doc says as what's best, but let's be honest, you sitting there being miserable and not having a decent quality of life in the meantime, is definitely NOT what's best.

    Hugs to you, and I hope you find some relief soon.
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    Quote Originally Posted by Ronnie View Post
    Has anyone on here ever been diagnosed with Lupus without a positive ana blood test? If so, how were you diagnosed and what was your symptoms?
    Hi Ronnie Yes,
    They did take a skin biopsie from my face,
    i know now for a few days i got CDLE,(waiting for result testing on SLE)
    (Look at my first post,for more info)

    Greetings Tom

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    I was dx'd without a positive ANA, I had several symptoms that would improve with steriod treatment and a terrible butterfly rash. They took me off steriods and did a biopsy of the rash which came out positive. My doctor said many Lupus sufferers will eventually develop a positive ANA and started me back on steriods, hydroxychloroquine, diclofinec and quinacrine. I count my blessings to have had a great team of doctors.
    All my symptoms started after snow skiing for two days in the bright sunshine, which, from what I understand, is how the disease is triggered for some.
    Last edited by runnergirl68; 03-26-2012 at 09:43 AM.

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