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Diagnosing Lupus
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David Zelman, MD posted:
In response to a number of questions regarding diagnosing lupus. I would refer you to the excellent resource from the NIH on this site. Basically you must have a certain constellation/combination of symptoms and or signs plus a + ANA ( antinuclear antibody). If this is negative it is fairly certain that you do not have lupus ( there are rare situations where the clinical part is so characteristic and test neg- other studies are then done). A positive test does not ensure lupus either in that there can be false positives (usually low +) or you may have a related disease like scleroderma , sjogren's syndrome and others.
Some symptoms of lupus are "soft" (joint pain, fatigue...) but others are more suggestive like protein in urine, pleurisy, abnl blood cells and carry more weight to diagnosis.
Tricky but not overly mysterious.
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4Watermonkeys responded:
Thank you for the information. Also, how does a doctor approach the diagnosis when the symptoms are there, but the ANA results are inconsistent - for example, one out of three times I tested within limits for lupus?
 
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lisaisweavebee responded:
Thank you for the clarification. I have read conflicting reports concerning ANA. I have read that once it is positive it is always positive...then I was told that it can fluctuate with treatment going from positive to negative due to the medicines...that labs are notorious for not handling the specimens correctly which can then mess up the values...that certain test methods - whether the lab used EIA vs. IFA - are more reliable than others...and all this information has come from reliable sources (rheumatologists, LFA, The New England Journal of Medicine...) it's all very confusing.

My own experience concerning lab work has been positive ANA with positive dsDNA on both the initial testing and then on confirmation testing. But now, two years later and on plaq with bouts of pred thrown in, my levels are now normal for both ANA and dsDNA but my rash and joint pain are worse.

Lisa
 
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trisha3357 replied to lisaisweavebee's response:
I had a negative ANA however, my doctor said I had an obvious open and close case and that I did have lupus. Maybe it more obvious in some cases and harder in others. I know I had 90% of the symptoms, the only thing that was off was the ANA.
 
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ahhee6 responded:
My hands swell up really bad and turn dark red when Im active. I get sharp pains in my chest every once in awhile when I take deep breaths. I already had a Re.Arth test done and it was negative. Would Lupus be something to think about?
 
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shannongood responded:
This all started with it being dificult to walk and use my hands. i was told i had tendinitus... muscle pain, joint pain and it grew from there. i was told i have inflamation of the cervix, and that my chest pains are due to inflamation of the sac around my heart, but i swear im having a heart attack.
I have been being tested for ms and lupus, my neurologist says that hes not sure i have either. I do have a rash that goes from cheek to cheek across my nose and a rash on my chest that gets worse in the sun, especially if i try to use a tanning bed. i have tingling and numbness of my arms, hands, feet and legs. I also get this burning sinsation through my thighs and head. Ive been having really bad migrains for the last month or so, almost everyday... Im on headache prevention med (sumatriptan) but it doesnt really seem to help most times. i get face and lip numbness, and the feeling that my tongue is too fat for my mouth. Im positive for ana and had a false positive for syphilis, my titer was 180 i believe. i get the white-red finger tips and toes when im cold, feel very sick when its hot, and get this itchiness up my legs while in a warm shower. I also have been very forgetful an alot more emotional lately. I also get this purple lacey rash all over my body.... Im not sure what i should do, if i should see a new doctor or stick with the one i have, but i feel like we keep going in circles and feel as if im wasting money. Any advice?
 
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Elizabeth_WebMD_Staff replied to shannongood's response:
Hi Shannon -

I wanted to stop in to welcome you while waiting for more response or advice from our members.

I am sorry to hear about all these symptoms you have been battling. Click here for a great response about diagnosing from Lupylisa.

Elizabeth
 
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R Swamy Venuturupalli, MD, FACR replied to shannongood's response:
Lupus can be very difficult to diagnose and in some cases by the time a correct Lupus diagnosis is made, there may be permanent damage to the lungs or kidneys. Studies have shown that many Lupus patients typically see 3 - 5 doctors before a correct diagnosis is made after an average of 2 - 3 years from the onset of symptoms. In your case, your symptoms could certainly be caused by an autoimmune disease. I recommend that you see a rheumatologist to confirm whether or not you have an autoimmune disease. This will likely involve a good history, examination and some lab work.


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