I have elements of sle and sjogrens along with raynauds, I have "probable sle" - although I identify with almost all the symptoms. I've had 3 appointments thus far, the first two with a really nice doctor who did not specialise in sle, and the third with a very nice sle specialist. On each visit I have been dazed and confused, and after returning home, cannot fully remember what I've been told. The last appointment my husband accompanied me, but even with that we still were unable to comprehend everything being thrown at us. At the end of the appointment I was asked if I had any questions, I said no. What should I be asking? I am on methotrexate, prednisolone and hydroxychloroquine now. I've had symptoms for years but have dismissed this as just being my age or over work, and also attending GP and being effectively told that these things were in my head. I've been off work since February. This has been the worse time of my entire life, and that's saying something, I am now just trying to come to terms with dealing with my earlier expectations that I would get back to how I was before and have my strength back. It has been extremely uplifting reading everyone's comments and bloggs on this site.
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