I was diagnosed with Lupus SLE 5 years ago now with several positive ANA results over 2 years.
Yesterday I went to my appointment to see the Rheumatologist. I told him how poorly I'd been feeling - I've been flaring since Feb when the joint pain was so bad I could barely dress myself, then the fluey aches took over along with the all over tendon pain so I've spent a lot of time in bed over the last few months. This is now so bad in my foot now that it really hurts to walk.
He told me my ANA test was now negative, which would be good news if I wasn't feeling so poorly. I asked him 'but many people have a negative ANA and still have a diagnosis of Lupus don't they?' and he said something 'bla bla bla..' I couldn't focus on what he was saying. I left the hospital in tears because it felt like he was saying that my blood results didn't show Lupus. My ESR has risen again from 8 (this time last year) to 13 (in Dec) to 22 which I know isn't that high, but is still higher than 'normal'. It feels so frustrating when your blood tests don't explain why you feel so poorly. I feel just the same kind of pain as I did when the ANA was positive. Can anyone else relate to this? I feel really upset about it - like the rug is being pulled out from under me.