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Sandy's Mom
New Member


Date Joined Feb 2012
Total Posts : 8
   Posted 10/3/2016 11:01 AM (GMT -6)   
Hi everyone,
I am not new to this forum, but have rarely posted (if ever). I have a question.....
How many of you had ANA blood testing multiple times that came back negative before finally getting a positive and subsequent SLE diagnosis?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/3/2016 11:49 PM (GMT -6)   
If your doctor was waiting only for a positive blood test then he's not a good doctor. There is a list of 11 indicators of Lupus and you need to have 4 of the 11 to have a diagnosis. Positive ANA is one of the 11.

So you could have lupu,s but have a negative ANA test.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7467
   Posted 10/4/2016 7:17 AM (GMT -6)   
Yes, you can have a negative ANA before having a positive one. Like Joy said, you can also have Lupus with a negative ANA. Unfortunately, there is no one test or symptom that diagnoses Lupus.

Typically, four or more of the following criteria must be present to make a diagnosis of systemic lupus. The “Eleven Criteria” are:

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.

It sounds as though you've had some bad Dr experiences - you need to find a Lupus knowledgeable Dr. I suggest checking with the Lupus Org at www.lupus.org to find your local chapter of the organization. Then check in with the local chapter to see which local Drs are active on the advisory board -- these are generally the Drs most interested in and most experienced with Lupus in your area.

Also, don't go into the Dr saying, "I think I have Lupus". Go in with a list of symptoms and when they occur. There may be another diagnosis that fits more closely for what you are experiencing.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 10/4/2016 8:37:44 AM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/4/2016 7:58 PM (GMT -6)   
Here's a tip on UV Ray protection....
Buy clothing at coolibar.com. They have sun protective fabric in their clothing and makes great hats and gloves. I don't step one foot outside without my sun protective clothing, hat, or gloves.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Sandy's Mom
New Member


Date Joined Feb 2012
Total Posts : 8
   Posted 10/5/2016 8:45 AM (GMT -6)   
Thanks so much Joy. I had not heard of this website - will check it out! :-)
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