Hi MJ,
I have been tested for lupus too many times to count over the past 25 years but have never been diagnosed with it. I was suspected of having it the first time back in 1990 when I had chronic joint pain, a positive ANA, increased erythrocyte sedimentation rate, and false positive on the RPR (screening test for syphilis). The rheumatologist dismissed the idea of lupus, but due to the 8/9 on the Beighton scale and obvious joint laxity from head to toe, he diagnosed the EDS on the spot.
I now consistently have a high rheumatoid factor (typically >70 IU/ml) but no diagnosis of rheumatoid arthritis despite chronic inflammatory joint pain.
My new primary care physician suspects that vasculitis may underlie the joint pain, chronic weird head feelings and what appear to be simple partial seizures upon the transition from wakefulness to sleep. Vasculitis may also explain the chronic platelet hyperaggregability (platelet clumping) that underlies my 30+ years of vestibular dysfunction (rotational vertigo, low pitched tinnitus, and chronic disequilibrium). Plavix and aspirin do a great job of keeping the vestibular symptoms away but don’t do anything for the weird head stuff and chronic pain.
All that plus EDS hypermobility type.
MTD