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    Old 07-24-2013, 06:02 PM   #1
    michelle936
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    very confused, positive ANA and positive Anti-dsdna

    So I have been sick with a mystery illness for the last year or so. I've seen every specialist, and the first thing they looked for was a malignancy, but there seems to be nothing. Then I saw a rheumatologist and she sent me for blood tests that came back with a positive ANA and positive anti ds-dna. From what I've read, positive anti-dsdna is VERY specific to Lupus. I never thought I had Lupus because my symptoms weren't specific to it, but after ruling almost everything else out, I'm thinking more and more that Lupus could be it. Because my symptoms weren't specific enough, my rheumatologist told me she wanted to see me again in 3 months to see if there were any progressions. I'm really becoming more certain that it has to be Lupus with these positive tests, and I'm worried that I won't be able to get a diagnosis for a long time to come.

    Some of my symptoms include:
    Extreme fatigue
    Constant low grade fever
    Neck discomfort
    Headaches
    Random pains in fingers and knees (not constant, every once in a while)
    Chest pain when breathing deeply
    A lot of memory problems
    Thinning hair
    Can barely work out or walk at the same speed as most people

    What do you think I should do next in order to speed up finding a diagnosis? How do I make it clear to my rheumatologist that I feel like this is becoming more and more urgent?

     
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    Old 07-24-2013, 08:47 PM   #2
    ladybud
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    Re: very confused, positive ANA and positive Anti-dsdna

    I would look at all other tests that were done, and be sure a complete workup has been done. You should have a CBC, urine, sed rate, CRP, chemistry panel, anti-Smith and anti-RNP antibodies, anti-phospholipid antibodies, plus complement levels. If any of those are missing, I would ask that they be run now to expedite getting a diagnosis and starting treatment so you can begin to feel better. There is no point in waiting 3 months. I agree lupus is a strong possibility since anti ds DNA is positive. How high was that, and how high was your ANA? I would ask for copies of all your labs and hang onto them.

     
    Old 07-25-2013, 04:39 AM   #3
    VeeJ
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    Re: very confused, positive ANA and positive Anti-dsdna

    Hi. One reason that rheumatologists don't move as quickly as we might expect is that they usually use the ACR criteria in evaluating for lupus. If you haven't read them yet, look for them in the "sticky posts" (permanent info posts). All "stickies" are located above the user threads. Generally---but not always---you must meet 4 or more of the 11 to sustain a dx of systemic lupus. These may be met over time, meaning not necessarily simultaneously, so envision checking them off in indelible ink.

    Assuming you were properly evaluated for all 11 criteria---through review of your medical history, physical exam, blood labs, urinalysis, etc.---the rheum may think you haven't met "enough" yet, or may want to see your labs confirmed one mroe time.

    But once you review the ACR criteria & your labs, if you have doubts that waiting makes sense, you should call her. Or if you found any red flags---say, protein in urine coupled with abnormal BUN and creatinine on your blood labs, and along with positive ANA and positive anti-ds-DNA---well, there'd be no sane reason to wait: you'd want the next step (probably kidney biopsy) now, not later.

    In contrast, if your ANA and anti-ds-DNA aren't very elevated *and* all other essential labs were actually done & were relatively normal, your rheum is likely feeling much less urgency about confirming lupus. One reason is that people can actually have a low-positive anti-ds-DNA yet never progress to lupus. Another scenario: patients can take awhile to fulfill 4 or more criteria. Finally, doctors should not diagnose lupus & prescribe meds before they're "sure", because lupus meds either modulate or flat-out suppress the immune system, which you really do not want if you really don't have lupus.

    But all that said, waiting is very hard. You could just call & ask her to explain the wait. A good rheum with good communication skills should be willing to share her thinking with you, especially in that you're a new patient. Anyway, let us know what happens next, OK? Sending best wishes, Vee

    P.S. One of the stickies contains some reading suggestions. I borrowed library books on lupus & found them very helpful, as they helped me understand more of what the doctor meant & all sorts of things he didn't state. Doctors just don't have time to explain lupus to a new patient, as that would require hours (probably) to do!

     
    Old 07-25-2013, 04:43 AM   #4
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    Re: very confused, positive ANA and positive Anti-dsdna

    P.S. I forgot to ask whether your thryoid levels were checked. Thyroid disorders can cause many of the same symptoms as milder lupus. Because they can co-exist with lupus, it makes sense to have them checked, too.

     
    Old 07-25-2013, 07:09 AM   #5
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    Re: very confused, positive ANA and positive Anti-dsdna

    The pain in deep breathing is likely to be pleurisy, one of the critertia on the list of 11. If you get your other lab results, feel free to post them with the reference ranges for comment and help in interpretation. I hope your Dr. will go ahead and do anything additional she can now to avoid the wait. I'm not sure what she is waiting for, and since treatment often takes 3 months or more to make a difference in how you feel, you could be the same until January or longer. Just be honest about how you feel and what you want to happen. Assertiveness is necessary in the arena of rheumatology!

     
    Old 07-25-2013, 08:11 AM   #6
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    Re: very confused, positive ANA and positive Anti-dsdna

    I'm so sorry, I'd overlooked your listing chest pain, which Ladybug just cited, so I too hope you have a useful talk with your rheumatologist ASAP.

     
    Old 07-25-2013, 07:39 PM   #7
    michelle936
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    Re: very confused, positive ANA and positive Anti-dsdna

    Quote:
    Originally Posted by VeeJ View Post
    I'm so sorry, I'd overlooked your listing chest pain, which Ladybug just cited, so I too hope you have a useful talk with your rheumatologist ASAP.

    Thank you so much for all your replies. Reading it really did ease my mind a little. Yes, I'm actually already diagnosed with Hashimoto's thyroiditis which I'm on medication for and I also forgot to mention that I have autoimmune diabetes. As you can see, I'm prone to autoimmune diseases! I'm going to ask about the ANA levels and the anti-dsdna levels because I'm not sure how high they were, just that they were high.

     
    Old 07-27-2013, 08:23 PM   #8
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    Re: very confused, positive ANA and positive Anti-dsdna

    It may help also if you start a journal of your day to day pain, activities, feelings and don't forget the weather. Take it to your doctor visit, it may be useful as a tool to aid in your diagnosis and for your sanity. As well as you may find what activities to stay away from. And please keep in mind Lupus is different for every person, we may have similar issues but no two people are alike and such is the disease. I started at 30 getting a traveling pain and a lot of every day joint pain. It took another 12 years to start sprouting fevers of 104 or 105 every two weeks for no apparent reason. Five doctors and six months later I had my diagnosis. One was an infectious disease doctor, he checked me for any odd thing you can think of from some cheese disease to cat scratch fever. Keep your chin up and be patient. Better to get the right diagnosis than to rush it. And I agree...when you go get your blood work done, take the couple of minutes to fill out the paperwork and have them mail you a copy. I had a doc that would not even look at mine unless I was coming in the office, she missed some important info and then tried to blame me. Now I make sure I know the results too.
    Good luck and try not to stress!

    Last edited by Achycrafter; 07-27-2013 at 08:24 PM.

     
    Old 07-28-2013, 10:20 AM   #9
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    Re: very confused, positive ANA and positive Anti-dsdna

    The other reason for having the results on paper, is that if you see new Drs., many won't just accept your verbal account of a test being high, they want to see it in writing to believe it (I know, very annoying) and have a copy for your chart for future reference. So just start a notebook for all your labs, xrays, consult reports, etc. as this could be a long process and the more evidence you collect, the quicker you will get to diagnosis and avoid unneccesary repetition of costly tests.

     
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