Try going to lupus.org. I've found a lot of answers there and it's written in words that are easy to understand. Sorry it's take so long for you to get an answer.

Not having a positive ANA does not mean a person does not have lupus. The ANA can go back and forth between positive and negative on some patients. It is rare, but it happens to me, one of my friends and a couple of people I have met on a different message board. There isn't one test for lupus. The diagnosis should be based on blood work and what the rheumatologist sees as s/he sees the patient over time.

Unfortunately it does sound like Lupus. And positive ANA is usually foolproof. I don't know anyone who has a positive ANA and does not have Lupus, however, some people who do have it can have a negative ANA result if the Lupus isn't active.

I feel I need to offer one clarification to some of these answers. Your ANA can be positive or negative dependent upon how much inflammation you have in your body at the time of the test. If, for example, you have been on steroids and your inflammation was knocked down, your test may not show a high ANA.. Now, a high ANA can show up in MANY autoimmune diseases. It’s the anti double stranded DNA that is LUPUS SPECIFIC to a degree so high that even if you were having a ‘good week’ and had a low ANA test result, if you have a positive anti double stranded DNA test, just that test being positive alone puts you into the lupus category by as much as 60%. When you have them high on both tests, you are looking at 95% chance of Lupus.. If you have a high ANA, but no anti-double stranded DNA, you need to look for another disease. Also, that anti-double stranded DNA isn’t like the ANA, it doen’t go ‘up or down’. Either you have the anti ds DNA or you don’t - that value shouldn’t change as it is part of your genetic coding.

To recap according to my understanding:

High/Posiive ANA alone - many autoimmune diseases but not lupus
Positive anti DS DNA alone - 60% chance of lupus, must wait for other symptoms to develop
Positive anti DS *AND* high ANA - 95% chance of lupus. At this stage, if the ANA (inflammation is high, other symptoms have also developed and a lupus diagnoses is just around the corner.

Please note, Mixed connective tissue disease will also show a positive for anti-double stranded dna, but only at the level of a 20% probability. Many times, people get a MCTD diagnoses only to be later diagnosed with lupus.

I hope that clears it up a bit for you.

Yes, I had positive ANA titre's for years and was told it could be Lupus, then told the ANA were "speckled" and then negative at times too....so, until I had a positive anti-DS DNA (which was about 9 yrs. of one dr. saying it was probably Lupus, another saying maybe or "undifferentiated" that I was definitively diagnosed with systemic Lupus.