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Any Advice?
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Undiagnosed posted:
Hi everyone,

I've been seeing my rheumotologist for close to 2 years after being referred by physicians who thought I may have Lupus. In the beginning I was only testing 1 or 2 markers, now I'm testing 3 markers continuously. To my understanding I cannot be clinically diagnosed until I hit 4 markers. I have numerous Lupus symptoms and suffer daily with the pain and fatigue that comes along with it.

Has anyone else had such a long and difficult road to diagnoses? Any advice and/or encouragement would be greatly appreciated. It's been a long, rough journey so far. Thanks.
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lupylisa44 responded:
There is no single blood test for diagnosing lupus. Systemic Lupus Erythematosis (SLE) is diagnosed using 11 criteria. IF you have 4 out of 11 it is likely you have lupus.
  • Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
  • Scaly rash, called a discoid rash, which appears as raised, scaly patches
  • Sun-related rash, which appears after exposure to sunlight
  • Mouth sores, which are usually painless
  • Joint pain and swelling that occurs in two or more joints
  • Swelling of the linings around the lungs or the heart
  • Kidney disease
  • A neurological disorder, such as seizures or psychosis
  • Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)
  • Positive antinuclear antibody tests, which indicate that you may have an autoimmune disease
  • Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test
  • With love, with patience and with faith, we'll make our way.


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