I am new to your site. I am really struggling at the moment with lots of symptoms and am waiting for a referral to rheumatologist. I had a appointment for next Friday but it has been cancelled so no idea when I will get another one. I have been having problems with my memory and headaches/foggy head for a year. Due to previously having breast cancer I have had ct and mri etc to rule out a possible spread. scans show meningeal enhancement so been referred to neurologist. GP ran bloods and tested positive forANA, SSA AND SSB in March this year. Had a lumbar puncture at the beginning of July and lots of blood tests. CSF is high for protein, blood shows chronic inflammation, high protein, high immunoglobulin. Neurologist reported that I have no reflexes in my lower body and poor reflexes in my upper body. been seeing a eye specialist for nearly a year for dry eyes. I control this with gel 4-6 Times a day and they are suggesting plugs. Mouth is dry and had stones in my saliva ducts 7 years ago. My daughter was born with the owl rash which I think might have been neo natal lupus because of the antibodies. I often feel sick and sometimes dizzy. My chest is also very painful with a cough and I have lost most of my sense of smell and taste. Quite a lot of aches and pains,tiredness and sleep is patchy. So frustrated about appointment, not sure how much more I can take. Does anyone know if you can have ssa/ssb and not have SS? If it is SS, anyone got any idea what sort of help or treatment I might be offered?
Any advice will be gratefully received.