Has anybody had a diagnosis of lupus but their test for antibodies against double strand DNA was negative (sometimes test is listed as anti-dsDNA antibodies)?
History for anyone carrying to read a mininovel:
I saw a rheumatologist as my ANA was off the chart > 1280 (number might not be exact - I don't have lab copy in front of me). Rheumatologist diagnosed me with Raynaud's syndrome. Started me on nifedipine to help circulation in hands. Improved and fissures on hands actually started to heal. He felt strongly I had lupus as I had joint pain in one elbow and chest pain (upper left). Lab missed running one of the tests but the others came back. Anti ds DNA antibodies was negative (result 0 with <100 being negative). CCP IgG antibodies were also negative (result 1 0-5 considered negative). Complement levels normal. thyroid peroxidase and antithyroglobuline antibody normal. Sjogren's anti SS A normal (result 22 negative is <100). Sjogren's anti SS B is negative ( result 29 - negative is < 100)
So test wise
No thyroid issue
Joint pain - although pain not severe all the time
rheumatologist says even if missed test (I believe it was for extractable nuclear - assuming Smith) is negative with such a high ANA and joint pain and Raynaud's he is inclined to keep tracking this as it may turn into lupus even if not able to be labeled as such currently.
Just curious what other people's bloodwork who have actually had diagnosis of lupus looked like in the initial.
My diagnosis came after a biopsy from a skin lesion.
My ANA tests are not always positive but with lesions on my face (discoid Lupus) it's impossible to deny. Plaquenil controls the sun allergy but not the fatigue or the lesions.
I just came across this as I was about to sign off and go to bed. I didn't know what your ANA was when I sent you those notes. Mine is 1:1280 and my anti-SM and DSDNA have always come back negative but the doctor has to go by your symptoms along with your ANA. I was once told that if my DSDNA was negative then I had little chance of it attacking my organs and that was good. As you know, it has attacked my heart so that wasn't true. Anyway, don't drive yourself crazy trying to put together all the pieces. You don't have to have all the symptoms or all the blood work come back positive for it to be lupus. Take care of yourself. Like you have told me, things can turn for the better or the worse at a moments notice. I am not trying to scare you, please know that, but on the days I have ended up in the ER and then in the hospital for almost a week at a time were days that started out where I actually thought I felt pretty good. Just get your rest. You need to not worry about housework but take care of yourself. Housework can wait.
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