This year I have noticed much hair loss only on my head. At 1st I wasn't sure but now I am. I had lots of hair & now I have thinning spots, mostly on the crown of my head. I was diagnosed by the cornea specialist with Sj this year at the age of 60 after many years of treating all the symptoms separately. I have had some blood test for Sj, RA, & Lupus with all negative results. My PCP suspects Crest disease because of the hair loss & the sores on my face. I will be going to an RA who specializes in Sj to see what else may be going on & to treat the Sj. I suspect I may have Lupus. Does anyone have these symptoms(hair loss & face sores) with Sj or Lupus? I suspect I may have lupus despite the negative test results. Did anyone test negative for lupus & then tested for it again (or have a different test) and get positive results for lupus? I also have gastro neuropathy, non-specific motility disorder of the esophagus, chronic pancreatitis, etc.. Thank you for any replies.
P.S. It would be nice if a doctor with advanced knowledge & experience with all of this gets involved with these discussions, just to give us a list of specialist & where they are located (so we could try one on our own so that this doctor would not have any liabilities - he wouldn't be referring us to a particular doc but just giving us a list. I would like to ask a doc with this illness, what doc he see as a patient?!)!