Possible to have Lupus with Negative blood tests?

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Lori120
Regular Member


Date Joined Apr 2008
Total Posts : 29
   Posted 1/19/2009 5:14 PM (GMT -7)   
I was wondering if it's possible to have Lupus without positive tests. I'm positive RA Factor and have arthritis in every joint. One rheumy said I have RA and another one said I don't. I have ulcerative colitis, fibro., bad gerd/acid reflux, high calcium serum and high PTH(parathyroid). Doc says it's secondary to something. Also have very low ferriton level and very low Vit.D. Have osteoporosis.  Doc says I have autoimmune issues and rheumatic. Been tested by neurologists because I'm have hundreds of pins and needles through my body and episodes that look like seizures. I'm taking an EEG in a couple. I lose my balance and get dizzy during the week. I also get blurred vision. Took EMG and have pernial (typo?) paulsy but my foot doesn't drop. Weird. Also have carpal tunnel syndrome in both hands. Wondering if it's because I have arthritis in both wristis. I've never had a rash. I'm 57yrs. old.
 
My daughter who is in her 20's has been having rashes on her chest,back and shoulders when she goes into the sun. A biopsy was taken and came back "possible mixed connective disease" or Lupus. Her blood tests just came back. He lupus profile is normal but her Antiphospholipid Syndrome Comp (APTT) came out low positive and her DRVVT came out low. Her Anticardiolipin Ab, IgG and IgM came out low positive also. All the Beta-2's came out okay. Also, there is a trace of protein in her urine.
 
I would appreciate any comments.
Thanks.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/19/2009 8:51 PM (GMT -7)   
Yes, it is possible to have Lupus without positive blood tests. There are NO tests that say "this is lupus positively and cannot be anything else". Lupus is defined as having 4 of 11 symptoms, as indicated by following the '4 of 11' link in my signature.

It does sound like either you and/or your daughter could be suffering from some auto-immune related illness -- but there are so many of them! And they are "mix-n-match" when it comes to symptoms. Many of us here have found that the actual diagnosis is less important than treatment -- these are not really "curable" illnesses as much as they are manageable - and there are lots of ways to treat and minimize the symptoms.

Mixed connective tissue disease, MCTD, as we like to call it, means about the same - some sort of auto-immune mixture, but not sure exactly what the mix is, so this is the official diagnosis. As long as you feel your symptoms are getting adequate treatment, stay the course -- but if not, maybe check in with a lupus-aware rheumy. These docs can be found by locating your local chapter of the Lupus Org, then asking which local rheumys are working with the chapter -- these are the docs who are most qualified to diagnose lupus.

Hope this helps, and that you are both feeling better soon,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 6mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex

Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

"Life is far too important to be taken seriously." –Oscar Wilde, 1982

 

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