Re: How many originally tested negative for ANA only to have it turn positive later
Dear Erin, It's Vee (again!) on this subject.
I was positive for anti-Ro but NEVER was positive for ANA. This happens, I was told, about 1/3 of the time in the *SCLE subset* of lupus. I also had annular (circular) nonscarring rashes that are unique to this subset of lupus, for 8+ years---and THOSE pathology results also came back suspecting lupus. At time of Dx, I scored a "4" on the "4 of 11" ACR lupus criteria.
The two Manhattan specialists I saw (rheumatologist & dermatopathologist) both said these were NOT unusual findings for SCLE. They told me that in some people, the anti-Ro is thought to "mask" the ANA finding.
While anti-Ro can also be positive in Sjogren's, the recurrent photosensitive rash *alone* threw me into the lupus arena (not to mention my lifelong history of varied problems).
I understand your frustration---I was beside myself until the moment I walked into my Manhattan rheumie's office. He was SO succinct---and also scathing about my long medical odyssey & the "findings" of my suburban doctors (he broke me up). Until that moment, I had no idea how large the difference could be between drs. located a mere 20 miles apart.
What do YOU think you have? And how long do you think your drs. will allow you to have it, before naming it & treating you? Have any of them said, Gee, let's wait until we get three positives? Or, hmmmmm, let's wait until her ANA turns positive? If you hear anyone say those things, my take is that you RUN to find a new rheumie or dermie... (Obviously I'm no dr., so this is only my unschooled personal opinion.) Hang in there & good luck. from Vee