Just a little update for all that have followed my journeys over the last 3 years or more. I have now been removed from the lupus clinic at Guys and have a telephone appointment with Prof Beverley Hunt later this month. My diagnosis has been confirmed as Cerebral APS so at least I now have that to cling to as Neurology said no MS or other degenerative disease. Although Cerebral APS is doing a good job of destroying my brain all on its own!
I am hoping for a good conversation with Prof Hunt but not sure there is anything more they can do than the drugs I am currently on.