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Feedback needed on ANA / Elisa / DR's opinion.

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Posted 5/3/2012 4:59 PM (GMT 0)
It's been a little while since I posted here last. To recap; I'm a 25 year old female. After almost 6 months of tests, repeat tests, and mris, my diagnosis has finally been narrowed down to an "auto-immune process." And further narrowed to lupus or sjorgen's syndrome. I started seeing a rheumy last month in Boston who has narrowed things down to my repeat ANA testing coming back positive.
MY inital ANA titer was only 1:160 with a speckled pattern. My RF was a tad high, and my SSA-RO was grossly high. Hence the referral. They tested me again in Boston as they claimed to have a more specific testing technique done by hand, blahblah. My ANA titer came back at 1:1280 with a speckled & homogeneous pattern. I emailed my doctor when the results came back to ask his opinion based on that. . His response in short was that they focus more on the ELISA rather than the number and pattern. And that since ONLY the SSA was positive, it's not indictive of lupus and my symptoms aren't "specific enough."

To me, my symptoms are quite specific and have been all along.
symptoms;
headaches, EXTREME fatigue, constant joint pain & muscle pain, nausea, depression, anxiety, difficulty concentrating, some memory loss, dry skin/scalp especially, I do have a SLIGHT malar butterfly rash, but everytime i see this doctor, it's faded down and not as evident I suppose, I've recently gotten a few photos to show him otherwise. Photosensitivity, some joint swelling, some mouth sores.


I have the Schirmer test scheduled for the 10th to measure my tear production. I have never noticed an issue with dry eyes or dry mouth. So I personally don't think I have Sjorgen's. I'm not sure what to do. I'm feeling exasperated. I trust that the doctor knows what he's doing, but I'm curious as to why he thinks the numbers/pattern don't matter in the diagnosis and why he seems fairly certain my symptoms are not "specific" to lupus. Any feedback would be greatly appreciated.

OH; he did start me on Plaquenil about a month ago.. No imporvement as of yet.
Posted 5/3/2012 5:08 PM (GMT 0)
Some Drs rely only on tests to make a diagnosis, although the Lupus Org (see diagnosis lupus link below) and the CDC rely on a combination of symptoms "4 of 11" to diagnosis Lupus. Other Drs look more at the whole picture.

However, usually we end up having our symptoms treated long before receiving a diagnosis -- part of the diagnosing process is to see which meds, if any, we respond to.

If your Dr is taking steps to relieve your symptoms, that's great. If not, you may want a second opinion. I would check the Lupus Org to find the nearest chapter, then attend a meeting and ask people what Drs they suggest and which Drs use which methods of diagnosis and treatment. Not all rheumies are well-versed and liberal in their approach.

Hope that helps -
Posted 5/3/2012 5:11 PM (GMT 0)
True. He stated that I need both, the tests & the clinical symptoms for a diagnosis. My SSA was 154 on the last test.. and my ana titer was high, but everything else was semi normal on the bloodtests. MY WBC was only a tad low. I did send him another message to let him that I feel as though things are worsening. I'm just confused by him saying my symptoms are not specific enough for a diagnosis of either. And that the numbers and pattern do not matter. ;/ This has been a very confusing journey all along. I specifically wanted a referral to the Boston doctors as I heard wonderful things. It's a two hour drive for me, so I'm slightly bummed that I'm still waiting on an answer, however I do know that it all takes times. Do you have any suggestions as to what medications I could ask about / to try other than Plaquenil?
Posted 5/3/2012 5:41 PM (GMT 0)
Personally, I like to stay out of the way and let the Drs decide the medications and treatment plans. If I try to do Drs job they seem to check out and not think thru the options to find the best things for the patient. You don't want to be driving your treatment from the layman's seat.

He probably already has something in mind to add next if the Plaquenil doesn't give you much of a result -- it usually takes 3-4 months before you feel any different -- and is to slow the disease more than to treat symptoms anyway.

But to answer you anyway -- Often Drs next add an anti-inflammatory like Prednsione, and later more heavy-duty drugs like Imuran, Cellcept, MTX and others.
Posted 5/3/2012 5:48 PM (GMT 0)
Thank you for your honest response. I'm grateful for the 'patient gateway' system the hospital has in place to contact your doctor / see the results / etc. I'm hoping his response will provide me with some suggestions / advice for the increasing pain / symptoms. Last I heard from him, he suggested aerobic exercise and more sleep, easier said than done of course. haha.
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