Well he is retiring but to his credit he was the fourth rheumy I've seen and the one to rediagnose me with primary Sjogren's and for that I'm very grateful. The problem is that he and his UK colleagues may not be gemmed up as I am having been able to research using reputable sites and speaking to people like yourself. Whereas they may not be reading up on Sjogren's because they are too busy with patients with other diseases?

I only had my brain MRI yesterday but plan to phone up the hospital and see if I can extract at least some of my results tomorrow. If my white matter has progressed beyond what is deemed as normal, then I'm not going to argue about trying Rituximab if I'm offered it. Otherwise I will see what the very dismissive ("you look too well to have a multisystem disease!") neurologist says in a month's time. I do wish the goal posts didn't keep changing.