Anyone else in limbo?

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New Member

Date Joined Jan 2018
Total Posts : 1
   Posted 1/11/2018 6:56 PM (GMT -6)   
Last year I went to the doctor for testing due to extreme fatigue and feeling unwell. In the past few years I'd developed IBS, heartburn, costochondritis, and muscle pain.

My ANA was positive at 1:320 homogeneous and RNP was positive at 5.4 AI (lab indicated above 1.0 was positive). All other results (RF, anti-Sm, etc) were normal. Went to a rheumatologist who said there was nothing wrong and lots of people have positive results like this. Most of my symptoms were dismissed as well. I thought it was weird he paid no attention to the test results because, based on what I'd read, RNP is not positive in healthy people. But whatever ... he's the doctor. So I gave up trying to get answers and just pushed on trying to feel better.

I decided to have my GP redo the test this year because I still have fatigue, muscle pain, IBS, costo, etc.

ANA was still positive, but a level lower 1:160 homogeneous and RNP was positive at 6.5 AI. So RNP went up, ANA went down.

I feel in my messed up gut that something is not right, but maybe not enough for a doctor to take the results seriously. Maybe it's something in the early stages, I don't know. Maybe it'll get worse, maybe it won't. My plan at the moment is to just keep testing each year to see what happens and keep track of symptoms, so if anything "bigger" happens, I at least have somewhere to point the doctors.

Is anyone else in this limbo of having symptoms and positive results, but no diagnosis, or no one taking it too seriously because you aren't sick enough?

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 1/13/2018 11:19 PM (GMT -6)   
Find another rheumy and get a second opinion. Labs are the not the end all for diagnosis and you describe symptoms that need treatment and could very well be lupus. It is true that some can have positive results for antibodies but not have the disease but you have a list of clinical symptoms.
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
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