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Hi , told had lupus by dermotologist referred rhuem having 2 possitive blood first border second accel have symptoms rhuemi says not have it

I have researched the different effects of lupus and know in myself that is what i have from being referred with a diagnosis to being told i will not "be Labelled" by the rhuemi is very confusing and even more upsetting. Can your bloods show positive ana and anticoag but not have it with numerous symptoms of feeling so ill and exhausted not fatiqued really really do not know what to do or what way to turn. I never asked for this diagnosis nor to feel as bad as i do made me feel like it was something i wanted and patronised that my symptoms were trivial would not do other bloods to confirm for herself as she said they had been covered so so so so upset by it making me feel even more ill. please does anyone have any advice.

2 Replies

Hello Farah1. Sorry to hear what a difficult time you are having. I know it is not much help, but for many people here, the road to diagnosis was a long one. Lupus is notoriously hard to diagnose and can appear to mimic many other conditions.

With a little luck, your symptoms will subside soon, possibly forever, but if not, then at least for a good long time (lupus can remit for years at a time!). If not, you need to resign yourself to repeated surgery visits and explaining again and again what your symptoms are. I really HOPE, for your sake that it is not lupus that you have - but if it is, remember you can always visit here to let off steam.


Hi Farah 1

I have been down that road even after having lupus for more than twenty years a neurologist tried to tell me I didn't have it. This went on for a few weeks before it was cleared up and guess what I do have lupus . It was of no surprise to me and he was very sorry about the upset etc he had caused me. Sometimes these things happen but I know that is of no use to you at this time, all I can say to you is get a second, third, fourth opinion whatever it takes until you know what is going on for you. I too hope that you don't have lupus but if you do there is lots of support out there, here being a great example. Take good care and let us know how you go.


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