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Old 11-22-2005, 05:19 PM   #1
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How many originally tested negative for ANA only to have it turn positive later

I have so far tested negative for ANA but positive (strong positive for Anti Ro SSA). I have only been testing since march of this year. How many of the people here have been tested negative to only later be tested positive.

Thank you,
Erin Stevens

 
Old 11-22-2005, 06:12 PM   #2
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Re: How many originally tested negative for ANA only to have it turn positive later

Hi Erin, not sure if this is what you were looking for but, my test changed from negative to positive depending on who was doing the labwork. Strangely the "cheaper" lab place that is off-site kept coming back negative.

But, at a big medical center downtown it has always come back positive. So I've found how they do the tests really matter especially in my case to get a solid diagnosis & treatment plan.

Hope that helps!

 
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Old 11-23-2005, 03:56 AM   #3
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
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

 
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