Waiting waiting waiting

Hi everyone.

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.

Welcome to the group Emma! Your experiences are not unusual, with the waits, testing, etc. It is possible to have positive SSA/SSB and not have developed the disease, but what you are describing certainly sounds as though you have developed Sjogrens.

There are two different layers of treatment. One is to treat symptoms and the other is to treat the disease. So symptom treatment might include eye drops, punctal plugs, and medication to increase saliva. To treat the disease, one might use disease modifying meds, for example.

I hope that you are able to see the rheumy and begin a treatment program soon. In the meantime, keep racing it for support and education. The forums are searchable, so if you are looking for info on a specific topic you can just search.

Thanks for your information