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Old 09-11-2012, 11:18 AM   #1
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Post A positive anti ds DNA but my doc says no to lupus

I am facing severe joint pain for the past 1 year with a positive anti ds DNA and negative RA factor. My ASO was also high when tested recently. I have been on HCQS since detected. But my doc says no to lupus, then what can it be? I also doubt having Raynaud's and also hair loss but no rash or any other symptoms. Can any one out there help me with this?

 
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Old 09-13-2012, 03:40 AM   #2
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Re: A positive anti ds DNA but my doc says no to lupus

Welcome & greetings! Have you read the "sticky posts" (permanent info posts) at the top of the thread list? One contains the Am. College of Rheumatology criteria for classifying systemic lupus (SLE). These are typically used for diagnosing, too. Doctors typically want to see 4 or more before making the dx. That said, footnotes to this list state that's not a valid requirement---i.e., people meeting less than 4 actually can have SLE.

My specialists (rheumatologist & dermatopathologist) both said that once each is met, imagine it being permanently checked, like you've used indelible ink. Can you tell how many of those criteria you've been tested for and queried for? And how many you've met?

I believe some criteria "weigh more", in the sense they're considered VERY diagnostic of lupus because they don't occur in other conditions. I think anti-ds-DNA & anti-Sm fall into that group, whereas something like joint pain can stem from a whole slew of conditions. How high is your anti-ds-DNA? Did you ask if it's significantly high, and what the odds are of a false-positive result? Has it been high mutliple times, or just once?

Another thought: this list doesn't convey the huge array of OTHER things seen in lupus. Instead it includes only those things that, when taken in concert, are best at distinguishing lupus from other conditions. But lupus hardcovers available in most libraries describes the whole gamut of symptoms. Meeting some of those presumably would add more weight to a lupus Dx.

And is your doctor a rheumatologist? If not, if I were you, I'd see one. Lupus is very tricky to diagnose because it has so many presentations and tends to flare & recede. Many doctors aren't up to the task, however much they think they are. (I went years b/c I had a low-odds presentation & didn't realize how unknowledgable my suburban doctors are, dumb me!)

I hope this gives you some ideas for reading & for posing questions to your doctor. Also that others here chip in, too. Post again soon, OK, and hang in there! Sending my warm wishes, sincerely, Vee

Last edited by VeeJ; 09-13-2012 at 03:42 AM. Reason: typo

 
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Old 09-13-2012, 04:38 AM   #3
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Smile Re: A positive anti ds DNA but my doc says no to lupus

Thanks for the reply. I have gone through the sticky posts long before posting this. And yep my ds DNA has been above 350 twice in six months time. Even though I am on HQS since the result has turned positive, but i have noticed that the pain has increased worsely now a days. I cant keep my joints flexed for more than 5 min. Before it was limited to elbows and knees but now it has started affecting my shoulders and hips also.

I have done RA factor also but it turned negative and about my doc. I am consulting a senior physician and not a rheumatologist. I didn't go for a second opinion considering his efficiency. He is gifted with the power to diagnose diseases just by physical examination alone and I havn't ever seen him doing a mistake in diagnosing. I know him personally and I doubt that's the reason he's hiding the exact diagnosis.

Please do help.

 
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Old 09-13-2012, 07:23 AM   #4
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Re: A positive anti ds DNA but my doc says no to lupus

Hi again. I think RF can be positive in both RA and lupus. Also, that it doesn't HAVE to be positive for either (which, for RA, is surprising, isn't it?).

Do you know the reference range for the anti-ds-DNA tests you've had? (Think ranges differ among labs & countries.)

Has he cast a wide net? For example, hypothyroidism can cause joint pain. In the US, thyroid tests typically aren't included in a "panel" and thus must be ordered separately. (My sister is hypothyroid & interestingly she & I shared joint pain, wild fatigue, and hair loss. She gained weight & I lost.)

Did he cast a wide net in the autoimmune ballpark by running OTHER autoantibody tests, not just anti-ds-DNA---like anti-Ro, anti-La, anti-RNP, antiphospholipid, etc.? Although anti-ds-DNA is on the criteria list, there are MANY OTHER autoantibodies possible in lupus. For example, I tested positive for anti-Ro, which is seen in both Sjogren's and lupus, but in Sjogren's, ANA is typically very high, and since mine wasn't, that created a "tilt" to lupus. Lupus-specific rashes proven by skin biopsy sealed my Dx.

Did you read the "alternative criteria" sticky post? Those also would add weight to a doctor who really knows lupus.

To be honest, I doubt that lupus is a disease that can be accurately diagnosed by physical exam---and I don't mean any disrespect toward your doctor. It can be so subtle, and its symptoms overlap so many other conditions; it's truly "the great imitator". Best wishes & bye for now, Vee

 
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