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Hello all, just to start this post off, she does have an appointment with a rheumy in the near future. But it's months off and she has been a nervous wreck. Please if you have experience with lupus and especially labs could you help me allay her fears. Her fears are related to the anti-dsdna test but I will give you the whole story.

My wife is 35 years old. Seven years ago, she was having asthma troubles and some other nonspecific complaints. Our primary care doctor is very thorough and ordered a battery of tests. She ordered an ANA screen and a DS-DNA test. Both came positive. I don't have the results with me. We went to a rheumotologists and from what I remember, this doctor said that A) the tests need to be through Quest not Labcorp; B) she wasn't having SLE symptoms so she wouldn't be ordering further tests. She said to come back if she develops symptoms. My wife became fixated on the DS-DNA, which she internet researched. The doctor's response was that she never should have had this test in the first place and the GP overstepped her expertise. I didn't fully understand the rest but this test has always been in my wife's mind.

--Fast forward 5 years. Two years ago she had a bad dentist appointment and developed TMJ. It was really difficult for her and it lasted over a year. She finally was overcoming it through exercise (she got a personal trainer) and things looked great until last June when she had an "accident." Someone giving her a massage walked on her back. She started to have bad lower back pain. She became very stressed about this and the muscle pain seemed to spread all over her body. There's been a real downward spiral the past few months. She has stopped going to the gym. She started to think again: "This must be SLE." I should get retested.

We have the same GP. She also was thinking along the same lines. She ordered several blood tests. The first one was a CBC with some general markers of inflammation. This was taken the same day she had a slight fever because of a cold virus. Her CRP was slightly elevated at 18mg/l (ref range <8). Everything else was normal. But my wife got very nervous. "I should get those SLE tests redone," she said.

Now her muscle pain has spread to her joints. Or, she describes it as joint pain. I feel like this may be partly due to her having SLE in the back in her mind. She reads about it on the internet. My mom once got a high rheumotoid factor blood test and convinced herself she had RA.

We waited... but recently decided to have her see a Rheumotologist. So, last week she got a battery of tests to show the Rheumotologist. When we got the results back, we were so happy:
First of all, her ANA IFA screen was negative. So were her CRP and other general markers of inflammation. But the doctor did the wrong DNA antibody test. She did SSDNA. It was negative. But the doctor didn't do the DSDNA. I thought: "OK, why even bother. We don't understand this test. Let's just be happy and wait for her appointment with the Rheumy."

But.. just this week she came down with what may be a UTI. She got the DS-DNA test, and it just came back. It's positive: They are 37 IU/ML ( > = 10 positive). Now she is convinced she has lupus, even though her more comprehensive blood test was negative for everything including ANA.
I'll be the first to admit that I don't have the first clue how to diagnose lupus, especially via blood tests. But I just don't think this DS-DNA is significant by itself.

I'm sorry for writing so much but I just don't think she has SLE. Her muscle pain is constant and non-specific. It doesn't respond to anti-inflammatories or steroids; it's gotten worse since she's stopped exercised. It seems very linked to stress. She doesn't have rashes or specific flare ups. Everyday just seems kind of the same. I feel like she has fibromyalgia, but I can't understand this DS-DNA test. I want to reassure her that a DS-DNA positive doesn't guarantee that she has lupus.

Please anybody with experience or some expertise, could you help me or advise me? If she does have SLE, I will support her but I want to understand this diagnosis process better so that I can reassure her while we wait for the appointment.

I hope I didn't break any of the rules of posting. I'm actually writing so much because I had a past experience where I was misdiagnosed with an immunodeficiency based on blood tests, which were faulty because of a medicine!

Elias
you're not breaking any rules that I know of. We're here to help!


Blood tests are only taken in context of symptoms. She *could* be psychologically working herself up... However, she also could begin to exhibit symptoms. Why???

the anti dsdna is a complicated test, the rheum who said dont use quest use labcorp(or vice versa) doesnt mean one is bad and one is good - if they were the same range then theyre the same test - its just that most rheumatologists dont trust anything but their own labs, and they know when they test funky because they're used to them.
Certain types of anti dsdna are pathogenic, meaning, yes she could very likely be positive and later developer symptoms of lupus. Certain types of ds-dna are helpful to the system ( I believe, low avidity). Now the new ds-dna tests labcorp and quest that tend to be ordered are the new multiplex (ref range 0-9, or 1-4 4-7 -7-9) from my extensive research only pick up medium to high avidity antibodies (the pathogenic ones). Some other tests the dsdna denatures and the tests pick up ssdna. However there are MANY methods of dsdna tests.

What makes your wifes situation confusing, is her ANA by IFA was negative... Its possible, but unlikely to be dsdna positive but IFA ANA negative. This usually means ssdna spoiled the test somehow.. but you said her ssdna was negative. Again, confusing - but these things happen.

Her results on dsdna from what I've read are neither sky high, nor are they low. Its not some odd 1-2 point deviation from normal.
My dsdna result was lower than hers (about half) and when I asked if it was low/high my newest rheumatologist said "doesnt matter, positive is positive".

So my sugestion for what you two should do. She should continue to work out, exercise IS the best medicine for now. In SLE is it always recommended, and makes one feel better during the although, pushing yourself too hard can lead to flares. This will help keep her sane in the meantime too.
Dont shoot her down, she may be working herself up OR se may really be feeling something. You can make it your job to watch out ad see if there really is joint swelling, etc.

With positive dsdna, I would expect a rheum to follow up and retest at the very least.
Hi all, thank you so much for your comments.
I wanted to explain a little bit about my reason for questioning this DS-DNA test result and the reason I'm skeptical that her pain is lupus, which by the way, I have no experience with, so I may come off as totally ignorant.

I'm skeptical of the DS-DNA test result because of an experience I had. I suffered from a lot of nonspecific generalized symptoms in my 20s, which turned out to mainly be due to depression and anxiety and lifestyle. I went to the doctors at least once a month. Finally, a test showed low IGG. I saw an immunologist who diagnosed me with CVID, even though I didn't really have any of the symptoms strongly. I took IVIG for a year. Then, I started thinking this made no sense; I stopped taking this medicine and my levels went up. So, it turned out the test by itself wasn't that useful.

I understand that the DS-DNA is very specific to lupus. But everything else has come out normal for the last five years. I'm looking at her liver test panels (BUN/Creatinine) and it seems fine. Yet, five years ago she had a positive DSDNA and now she has just got one. The change, of course, has been in her symptoms. Her muscle pain has gotten worse. But it's been a constant progression. It started two years ago as TMJ. She battled it for 2 years, was on the cusp of beating it, then had this massage, and it's almost as if it transferred to her back. Then, this summer it sort of transferred to her arms. And most recently, to her joints. Like I said, my mom once got a RF test positive and got bad pains in her hands, only to find out that it wasn't RA. I tend to be very pschyosomatic myself-- I actually gave myself TMJ when she was having it bad, only to realize that I was stressed. I rid myself of it with exercise and klonopin.
I'm going to search these threads for descriptions of the muscle pains. Having done a bit of research, I'm seeing that my original assumption that lupus joint pain was very much like RA was off base. I wonder how it is compared to fibromyalgia.
I know we won't have a definite answer til we get to the Rheum, and probably there will be many tests to take.
I understand your thoughts.

Dsdna is false positive in an extremely small percentage of the healthy population. Like 0.5-%1, depending on assay used. Sometimes its positive in the healthy elderly and those with mononucleosis, it should level out or decrease after a bought of mono.

Rheumatoid factor is a very non specific test, unlike dsdna tests. Again, not saying it IS lupus, just saying it should be monitored.
I had to wait awhile before responding, as I wanted to think clearly about the message you wrote and responses you have received. It seems your wife has symptoms of an illness, an abnormal blood test indicative of possible lupus, and the issue seems to be more related to you trying to convince her she doesn't have it. I think several things are going on here that needs to be addressed. It may be that you are trying to convince yourself she has nothing serious, which would be a natural tendency to denial and wishful thinking. In doing that however, she may be feeling dismissed, that her symptoms are really nothing more than lack of exercise, etc. In my own case, I had full blown symptoms of lupus for ten years before my ANA became weakly positive at 1:40, which most Drs would totally ignore. I since have developed many more symptoms and labs supportive of a lupus diagnosis including anti-dsDNA. So I think the focus should be on BELIEVING her symptoms, not dismissing them, supporting her in any way you can when she doesn't feel well, but encourage her to maintain as many aspects of a healthy lifestyle that she can. Arguing about WHAT it is takes energy away from both of you that would be better spent in more positive ways. I would try to support the idea of monitoring, and when a diagnosis becomes more clear, getting the treatment she may need to help her feel and live better. She may act MORE sick just in attempt to convince you something really is wrong, if you seem to not believe her. This is often subconscious of course. Her fears may be more allayed by your acceptance of the situation and showing that you love her, than trying to prematurely diagnose this yourselves. It will declare itself in time, and the best thing to do in the interim is treat the symptoms, continue to monitor her health at appropriate intervals, and be supportive without focusing on what name to give the illness. I know, after living through 10 years like this in my early 30's, how hard it is, but I hope you can move in that direction.





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