I'm hoping no news is good news this time. Haven't updated here since my rheumatology appointment nearly weeks ago. As expected I was rediagnosed from 2011 diagnosis of seronegative RA to primary Sjogren's. It was a little more daunting than what I was expecting because he then went on to say "without wishing to frighten you more than necessary" - that he was concerned my neuro symptoms were showing CNS involvement as part of the Sjogren's. I had a brain MRI in a different hospital 18 months ago and was told all was normal despite some white matter signifying small vessel disease.

The rheumatologist has written to the neurologist (who told me I was overthinking and looked too well to have a multisystem disease back in April) asking her to study my previous MRI and compare it with a new one I am getting done tomorrow. His hunch is that the SVD is part of my Sjogren's and if she concurs with this then he thinks I should try a big gun drug such as Rituximab.

He also sent me for a CT with contrast of thorax down to pelvis to rule out Sjogrens associated Lymphoma because of other symptoms and a swollen lymph node in my groin. I had this done a week ago and have heard nothing yet, so cautiously assuming that no news is good news - although this is the beleaguered NHS so I will phone hospital in a few days and clarify. Fingers crossed!

I'm feeling strangely calm and optimistic about all this now thanks to friends on the Sjogren's World Forum,Lupus UK healthunlocked and the Brittish Sjogren's Syndrome Association forum. I guess I also just feel SO much better to have a diagnosis I believe and can attribute most, if not all of my symptoms at last. I'm not expecting either test to show up anything too scary. And even if it does I'm just too sick of worrying after five years of feeling wrongly diagnosed and always up against it. It's relative chill time just now.

However I will always feel the greatest about of sympathy for those who are unable to find a proper reason for their symptoms or enough signs be properly diagnosed or treated. The shadowlands are no place to dwell for too long. Even waiting for results is less awful now there's a disease name attached at last. Courage and perseverence to all shadowlanders here.

If anyone else here suffers from disequilbrium/ vertigo as a result of small vessel disease in the brain then it would be great to hear from you about how it feels. Regarding my small fibre neuropathy (legs, arms and mouth) where has mine gone? I know about the SFN causing propriception problems and am thinking mine is a classic case of these peripheral issues too. But what I'm not quite sure about is whether the SFN is severe enough to have caused this severity of disequilbrium? The rheumatologist calls it "presumed SFN" because it didn't show up in skin biopsies taken from each calf last year. I admit that I just can't tell if the neuropathy is bad enough to cause my quite severe disequilbrium because it's stopped hurting much for a while now. It still does tingle and I do still have vague crawling sensations and occasional flash pains in my hands. But it's really nothing to moan about- not the excruciating symptom that paralysed me each night this time last year. So have many of my tiny nerves died causing some numbness as the neuro thought or has the SFN simply subsided? How can I tell? More importantly how can a neurologist tell without biopsying me again - this time properly?