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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
 

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Sweetheart,
I am sure you will still be welcomed here by all of us. Don't feel you have to vanish. I for one would be sorry to lose you.
xxxLola
 

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Huh? Now I'm really confused.
I didn't know about the whole 'blanching' thing being there in roseaca and not in the butterfly rash. And I thought, even if it's rare, that neg bloods could still mean a possibility of lupus if the symptoms are there?

Persevere as hard as it may be. If your sjogrens and LR dont explain everything that's going on with you, maybe you can now focus on the other 'stuff'? Is it possible to be able to contact Dr.Khamashta to explain you're unsure about your rash again?

Definately keep 'popping' in on here. Even if it isn't lupus, you still hold a wealth of information to give, and others to give to you.

:hug:
 

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Sorry that the visit has turned out this way!

Are you going to be treated for Sjogerns with medications?

Puzzled about the rashes, perhaps it would be better to see the Dermatology Team at St Thoms, as they do have more specialist knowledge of rashes! I just visited them - the rashes my immnologist thought were lupus, they now say could be vasculitis, or my medications, or all of those and lupus - rash does not present on me as text book rash 'not raised and not lumpy'. Well during my visit they took a biopsy to try and clarify things, but even they said it may not help them as things dont always show!

Anyway, please dont feel you need to dissapear - I will be happy to chat to you! If you feel there is still something missing in your diagnoses, dont give up - still take photo's and keep a record of things!

Take care for now,

Hugs,

Lesley
 
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