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Debbie Downer
Regular Member

Date Joined May 2009
Total Posts : 62
   Posted 5/13/2009 10:38 AM (GMT -6)   
My DR called me this morning to tell me that I tested negative for the other test that indicate Lupus and that I do not have Lupus. She said that it is possible that I had a false positive ANA? Anyone had that happen? I'm going to have my blood tested again and see if I test positive for ANA. What else might it be besides Lupus? I listed most of my symptoms in the thread (still looking for answers). I'm surprised those tests were negative. Lupus really fit all of my symptoms and I have 6 of the 11 criteria for Lupus. What are conditions that mimic lupus and give a postive ANA. My ANA was 1:320. She said there was no pattern when I asked. I'm feeling discouraged. She wants me to come in for more testing. My sister has adrenal gland disease (Addison's). Should I worry about that?

Veteran Member

Date Joined Jun 2008
Total Posts : 669
   Posted 5/13/2009 3:17 PM (GMT -6)   

Jenna - The rheumatologist is who you need to hear from and be tested by.  I think everyone agrees your doctor is not a part of the solution to your puzzle.  I have been seeing a rhuematologist for 1 1/2 years.  My ANA is consistantly positive and high, but I don't have other positive markers via other antibody markers in the blood (as yet).  My rheumatologist keeps testing for those every 6 mos. or so, as she believes my symptoms indicate something in the AI family will be "landing" and eventurally turn up the specific disorder I have via blood test.  But my symptoms and the positive ANA were enough for her to treat me with Plaquenil.  So your doctor is wrong to tell you, based on one ANA and one other test for Lupus - that you don't have it.  The rheumatologist - a good one - is who you need.  I know it's hard to wait -  I think you said your appt. was in July.   In the meantime, start looking for a new primary care doctor - this one is not worth your time and energy.  And keep reading and learning. is a great source of information.  You may not have lupus - but you've got something going on with lots of corresponding symptoms that need to be thoroughly evaluated.   Hang in there!


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 5/13/2009 3:24 PM (GMT -6)   
Hi Jenna, I went back and read your posts in "still looking for answers". I'm so sorry you are having trouble getting help for your symptoms.

your ANA titer is a "low" positive . . . but you can have lupus without a positive ANA. Lupus has such broad symptoms that it is really hard to dx w/o some indications in the bloodwork . .. but there are a few of us here who have received treatment w/o the positive bloodwork. There are even a couple of members here who have kidney issues which resulted in lupus-positive kidney biopsies and their bloodwork never showed a positive ANA. The rheumatologist is the best doc to put all of this together.

Make sure that you prepare well for that appointment. He/she should spend about an hour with you. Most of that time is questions. It would be helpful if you list your symptoms in a typed list - not paragraphs. You want him/her to be able to zing down the page and read easily. Then he'll ask you questions if he needs for information.

Its even helpful to the doctors to know what 'helps' you feel better. Does ibuprofen help? Sometimes taking an anti-inflammatory (like ibuprofen or naproxen/aleeve) round the clock for a month or so can be really beneficial. If you take ibuprofen, you'd take it 3 or 4 times a day, depending on how you feel. I think the naproxen is twice a day (read labels). If that helps, that you'll know that your problems stem from inflammation. Lupus causes a lot of inflammation . . . but so do other problems . . .lots of other problems. But that will help you figure out if inflammation is one of your problems.

If you get sores in your mouth, nose - take pictures. You'll need that for the rheumy. He can't count the symptoms if he doesn't witness them. . . so it won't count as one of the criteria until he sees it. When you get the malar rash and/or the rash on your eyelids, take pictures. Keep taking pictures and keep the best ones.

There is more information about doctor visits in Lupus Resources (link at the end of my signature. I hope your rheumy appointment goes well. He/she will probably order LOTS of bloodwork.

As far as your family is concerned. Just don't complain to them. Muddle through all of this until you get some confirmation from your doctor. Just do what you can from day to day and leave the rest. Once family has dug in their heels, its hard to change their mind . . . and every effort to convince them otherwise comes off as "hypochondriac" . . . so I wouldn't waste any energy trying to convince them you are sick. Just rest when you need to and do what you can as far as keeping up the house. Remember to do the things that "stack up" first. That would be laundry and dishes. Feed your family well, do the laundry and dishes and keep things picked up around the house. The other stuff (vacuuming, dusting, washing windows, floors, walls) can be done bit by bit as you have a little energy. That's how I kept up my house for 30 years while trying to figure out what was wrong with me. I was told it was depression too. The anti-d's really did help some . . . but not enough. The anti-d helped me feel more grounded. It felt to me that everyone was crabby and short fused UNTIL I had been taking the anti-d for a couple weeks. I actually didn't feel much different, but it was as if everyone around me was in a better mood. Ha haaaaa!!! Well . . . then I realized that it was my perception of them that had changed. Sometimes anti-d can even help with some of the pain. Just a thought.

Keep us posted.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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