I had my appointment with Dr Khamashta at the London Lupus Clinic, and felt like I got a pretty thorough lupus assessment. At first when he saw my face photos he thought it looked pretty classic lupus. However, it wasn't really flaring when I saw him, and although there was a good red patch on one cheek he said it was pretty definitely rosacea rather than lupus, as when he pressed on it, it went white. Since being home I have had a flare of the butterfly rash, and guess what - apart from that little patch of red that is always there, the rest doesn't go white when you press it. I also had obvious livedo reticularis, and bone dry shirmers test (so I do have sjogrens). I think my family history was fairly impressive for autoimmune disorders too. However when it came down to it all, not a single one of the blood tests came back positive so he has told me that I definitely don't have lupus.
In some ways I am regretting not having gone to a more general rheumatologist as a private assessment, as I still think there is something autoimmune going on, and this assessment was purely to rule out (or in) lupus. Still, I know I have had the best assessment I could have had by a real expert, and I have to accept the result of that.
I probably won't continue to regularly use this message board now, though may still pop in occasionally to check out how other people deal with symptoms I have in common with lupus.
Thanks all for your support and posts to my messages.
XX
In some ways I am regretting not having gone to a more general rheumatologist as a private assessment, as I still think there is something autoimmune going on, and this assessment was purely to rule out (or in) lupus. Still, I know I have had the best assessment I could have had by a real expert, and I have to accept the result of that.
I probably won't continue to regularly use this message board now, though may still pop in occasionally to check out how other people deal with symptoms I have in common with lupus.
Thanks all for your support and posts to my messages.
XX