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    Old 06-03-2004, 12:41 PM   #1
    rhyanenrose
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    What does this mean?

    I'm a newbie to this forum and need some help with interpretation.

    I received my blood test results for the autoimmune panel, and my ANA came back as 1:80 speckled. My anti-DNA was also borderline. Any ideas about what this may indicate?

    Brief history: I'm 32 years old. I've had symptoms on and off for 4 years. Some neurological like numbness and tingling, gait disturbances, seizures and some more connective tissue like myalgias, achy joints with no swelling, dizziness, major fatigue, sun sensitivity.

    The two neuros I have seen the past 4 years have suspected MS, but none of the tests have shown positive. I had lupus/autoimmune tests done in the past. The first time it was done was when all my symptoms started showing up 4 years ago, and everything was negative. Then about a year ago I had a hive-like rash and joint pains after being in the sun for a short while. Tested again and ANA was negative, but anti-DNA was borderline. Sed Rate was also weakly positive.

    Now my testing is showing positive and I don't know what this means. I will also be seeing an endocrinologist soon for a nodule on my thyroid. I have read that a low titer ANA can be positive with autoimmune thyroid disease, but my TSH and Free T4 were negative. I haven't yet had anti-thyroid antibodies done, so I'm waiting on that.

    Any ideas? Suggestions?

    Thanks.

     
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    Old 06-03-2004, 05:54 PM   #2
    lovemythreeguys2002
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    Re: What does this mean?

    I have read that a low titer ANA can be positive with autoimmune thyroid disease,>>>

    This is true, and many of your symptoms could be from thyroid disease. I would pursue this angle first, if you have thyroid antibodies, even with a normal TSH, you most likely need treatment, but it's not easy finding a doc that will agree to this....UGH

    Or you could have lupus and thyroid disease, they go together a lot, my Doc says 40% of the time. Keep pursuing
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    Old 06-04-2004, 03:50 AM   #3
    VeeJ
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    Re: What does this mean?

    Rhyanenrose,

    Which doctor is in charge of you? Are you hooked up with a rheumie as well as with a neurologist & an endocrinologist? And, if you've seen a rheumie, were you comfortable with him/her?

    Does your rash recur? Has it been biopsied? I ask because both photosensitivity and rashes *may* be lupus-related and can add two more "checkmarks" to a lupus Dx. In your shoes, I'd look for a dermatologist or dermatopathologist who knows autoimmunes, perhaps affiliated with a teaching hospital.

    Dermies can vary widely, I found. The ones I saw locally absolutely slept through 4+ years of highly positive results; but the teaching hospital specialists did NOT make that mistake.

    Have your doctors checked you for APS = antiphospholipid syndrome? AngelicBrat has written much on it, including a "sticky post" at the very beginning of this site.

    With all my best wishes, Vee I hope things start falling into place for you SOON.

     
    Old 06-04-2004, 06:14 PM   #4
    rhyanenrose
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    Re: What does this mean?

    VeeJ,

    I have mainly been seeing a neurologist who ran all the tests. She didn't say much about the ANA and borderline double stranded DNA except that she thinks I should go to a teaching hospital at a university like UCLA, which is about 4 hours away.

    I haven't had my appointment with the endocrinologist yet. I'm still waiting to discuss my fine needle biopsy report with him and see if he will test me for anti-thyroid antibodies to rule out Hashimoto's since that could be a cause of many of the symptoms I am having.

    I have not seen a rheumatologist yet. My neuro never mentioned making an appointment with one. If my thyroid turns out normal, I will consider finding one, or maybe just going the route of a teaching hospital to sort this all out.

    The rash I get when in the sun is more like a hives type of rash. It only takes a few minutes in the sun and my skin on my arms and sometimes chest will feel like it is burning, and within a few hours, I will have raised pink to red colored spots, or hives on my arms and sometimes my chest, neck and rarely face. It will itch at first too. As a matter of fact, I was out in the sun a bit today and I have it starting up right now.

    I've never had the so called 'malar rash' that I know of. But occasionally I do get redness and inflammation on my face that I just attributed to sensitive skin or rosacea. But it is not in the typical butterfly shape that is common with lupus. It is mostly just on my cheeks and chin, never across the bridge of my nose.

    I haven't had the rash biopsied yet. It doesn't seem to last very long, maybe a day at the most. I have often wondered if it is polymorphic light eruption. Do you know if PMLE can be associated with lupus?

    Yes, I was checked for anti-cardiolipins and they came back normal. No sign of APS or any other connective tissue disease. The only other test besides the ANA was the borderline double stranded DNA. What does it mean if that comes back borderline? Does it usually mean lupus if it is positive?

    It is all so confusing. I need a good doctor to sift through all of this and come to some conclusion. I'm sick and tired of feeling like this.

    TAke Care!

    Last edited by rhyanenrose; 06-04-2004 at 06:22 PM.

     
    Old 06-04-2004, 07:28 PM   #5
    lovemythreeguys2002
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    Re: What does this mean?

    The only other test besides the ANA was the borderline double stranded DNA. What does it mean if that comes back borderline? Does it usually mean lupus if it is positive?>>>>

    Hi...the ds-DNA is highly indicative of Lupus. My Rheumy said "if someone is DNA positive, they have Lupus"...not saying you do, but his is what he said.
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    Old 06-04-2004, 10:08 PM   #6
    AngelicBrat
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    Re: What does this mean?

    Hi there,

    I have a few comments for you. First of all, welcome to the board! I hope that you feel open here and feel free to post whatever is on your mind My name is Dana, and I am kind of one of the "brains" here when it comes to Lupus and APS.

    The Anti-DNA being borderline means that you probably have Lupus. The Anti-DNA is VERY specific for Lupus (Like 97%) so I would ignore your ANA value at this time. Antibodies tend to fluctuate up and down depending on disease activity, but sometimes when we feel the WORST the blood work comes back good and when we feel good the blood work comes back very high!!! Lupus is a very tricky disease and it is very individual too. Every person is different! The symptoms that you have indicate Lupus activity. I do want to comment on the APS symptoms too.

    APS can cause tingling, headaches/migraines, history of clots (miscarraige, strokes, mini-strokes, heart attacks and leg clots), all kinds of "MS like" symptoms too. APS mimiks MS big time! The fact that your Neurologist felt that you might have MS sends off a flashing light in my mind.. often we are misdiagnosed with MS!~ I disregard the anticardiolipin value in someone that has symptoms of APS. Was the Lupus Anticoagulant test done? And how about the VDRL? And also I recommend a protein electrophoresis study too. All of these can indicate that APS is present. You can also have APS in the absence of positive antibody tests. There is a form of APS that is called "Sero-Negative APS" and it must be treated the same as Sero-Positive. Do you have a history of miscarraige, clots or anything like that in your past? The fact that you have Neurological symptoms AND positive tests for Lupus AND symptoms of BOTH Lupus and APS is not to be taken lightly. I would see about getting to a Rheumatologist that specializes in treating LUPUS and APS PATIENTS. If you find one, hold on to them tight because there aren't as many in this world as I wish there were. I noticed that you had mentioned Thyroid too. Thyroid dysfunction can indeed cause an ANA to be positive and some of the symptoms you describe. The thyroid cannot cause an Anti-DNA to be positive though so there is more going on with you. Do you get dry eyes/nose/throat/vaginal area/anal area? If you do, its worth getting checked for Sjogrens Syndrome.. Sjogrens can go with Lupus and is easy to diagnose by doing a Shirmers blot test. All that intails is having a piece of blot paper inserted into the eye to measure the moisture. If it is "bone dry" then you probably have SJogrens syndrome. Sjogrens is autoimmune too, and goes with Lupus AND APS. Quite commonly a person with APS will also have Sjogrens too. Please take care and ask as many questions as you want Welcome again to the board!

    ~Luv, Angelic

     
    Old 06-05-2004, 08:17 PM   #7
    rhyanenrose
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    Re: What does this mean?

    Hi Angelic,

    Thank you for your reply. I had a ton of autoimmune testing and even the Sjogren's tests were negative. I don't seem to get the dryness much that is common with Sjogren's, but I do live in a desert, so when I do get dryness in the mouth, I usually attribute it to that. Also my lupus anticoagulant test was normal. I don't think I had the VDRL. What is that?

    If you would like, I could send you a file through your profile which will show what my lab values & reference ranges were, since it would take me forever to type it all here. Also, after looking at the reference ranges for the ds-DNA, it strikes me as a little odd, like 0-30 is normal and mine was <30 but on the high side of normal. It's hard to explain so I'd have to send you an attachemnt of the actual lab in order for you to see what it says rather than explaining it.

    I have another question. Do the joint pains in lupus tend to migrate around? Or come and go during a flare?

    My joint pain comes and goes in my left wrist and hand. Plus, the past few weeks, my right shoulder has been hurting really bad. Hubby said he could hear it upon movement. He thought possible rotator cuff. I also get joint pains in my ankle area on both legs, where my shins connect to my feet on the top. They can be pretty sore and without any redness or swelling. It will also come and go. And I have alot of muscle pain too that seems worse when I have the achy joints and fatigue.

    Well, please let me know if you want me to e-mail my labs to you through your profile. Thank you for your hlep thus far. Take care.

    P.S. I just looked at the sticky containing criteria from Saint Thomas hospital. The last one said low to borderline low lymphocytes. I looked at my tests from last year when I had the episode of joint pain, photosensitivity and rash that I mentioned in my first post, and my lymphocytes were borderline low. Why would lupus cause the lymphocytes to be low like that? My doctor never batted an eye to that.

    Last edited by rhyanenrose; 06-05-2004 at 08:31 PM.

     
    Old 06-06-2004, 05:01 AM   #8
    VeeJ
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    Re: What does this mean?

    Rhyanen,

    I just browsed a bit on PMLE = polymorphous light eruption, which you mentioned as a possible rash suspect. It's described as "idiopathic" in nature = of unknown origin; its most common rash format is a "papule" form; it is typically quite itchy ("pruritic"); and it generally subsides within 1-7 days without scarring. As one would expect, the familiar lupus bloodwork tests and biopsy results, etc. are negative by definition. It seemed to me that the Dx is made by ruling out other rashes.

    The two differential diagnoses mentioned in the article I just read were (1) contact dermatitis, and (2) subacute cutaneous LE = SCLE. (There are two SCLE formats: one annular, the second a papule-type rash.)

    You say your rash disappeared very quickly, similar to what the article said about PMLE. I'm sure lupus rashes can vary, but the rashes I had lasted many weeks (4 to 6, or even more).

    Re: your anti-ds-DNA test being "borderline": I have read that in titer tests, labs can differ in accuracy just because of the nature of performing titers. If a lab is off by one titer, the result can land on one or the other side of the dividing line between positive a negative. But in your place, I'd absolutely want repeat testing done, especially given that the borderline test was ds-DNA. I'd choose to "err on the side of caution" on that one.

    As for lupus pain, it can start and stop abruptly. It can migrate: shoulders one day, elbows the next. It's typically symmetrical, meaning both elbows, both shoulders, etc. I could just about hear my shoulders creaking, too, just like you described. Blinding pain---the kind you dare not move. (Good news: on medication I get pain still, but it's much more modest.)

    Just curious: have your doctors suggested what you should do about sun exposure while in the course of being tested for various possibilities? Some suggested to me that I should vacation in Florida. Only in retrospect did I sense they were trying to provoke a malar rash.

    I waited a very long time (4+ years) to take myself to a teaching hospital rheumie. When I finally went, it took all of several minutes for the the doctor to review my history and to write down his first 3 suppositions, for which he ordered confirming tests PDQ. The doctors had obviously seen a whole lot more than my suburban doctors and knew a whole lot more about the harder-to-diagnose cases, the "subsets", etc. In short---what a dufus I was for waiting so long!

    Wishing you the very best & hoping you can come up with a solid plan of action, from Vee

     
    Old 06-06-2004, 11:05 PM   #9
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    Re: What does this mean?

    Hello again!

    You can't email it to me because this board doesn't allow it. They feel that if communication is to exist that it must be where everyone can see it. They want everyone to share I guess I suppose it does make sense because what you are saying could be the same story that someone else is going through and they can relate!! Who knows

    As for the low lymphocytes, this is a common occurance in Lupus patients. Lymphs are white blood cells and they tend to decrease in numbers when we become ill! It's a phenomenon that just happens and the doctors that realized it just say that pretty much! One would think that since the immune system goes haywire the white cells would be high hey? Lupus is one of those diseases where there isn't one answer to every person's symptoms.

    Vee has covered the rest of your questions quite nicely Thanks Vee!! take care you guys,

    ~Luv, Dana

     
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