As some will know I was diagnosed with cerebral APS approximately 2 years ago at Guys Lupus unit. At my last appointment as I am not responding to warfarin or hydrochloroquine Prof D’Cruz thinks it may be a misdiagnosis. I am still lupus anticoagulant positive but my white matter lesions have increased dramatically compared with my previous MRI. I am now being referred to Neurology at Guys Paul Holmes to see what he thinks. Prof D’Cruz is also bringing my case up at the next haemo / radiography meeting to see what they all think. It’s extremely strange having had a diagnosis then just about coming to terms with it and then having it taken away and being back to square one.
If I do get a firm diagnosis of something else (thinking prob MS) after the next barrage of tests including the lovely lumbar puncture then I will come and say goodbye. I just wanted at this point to say a huge thank you to all that have given me such amazing support.
Update to follow you will all know when I know!