My first rheumie sent me for lots of tests (MRI, ultrasound, X-rays and a load of blood tests), started me on Plaquenil at my next appointment, then steroid injections into my shoulder joint. I really felt I was getting somewhere after 3 appointments. He felt it wasn't RA (which was suspected at my original consultation with my GP). He explained some of the other avenues he wanted to explore including getting to the bottom of my eye problems. This rheumie left and his replacement contradicted everything at my next appointment in December, brushed aside every symptom I raised, told me I had RA. When I asked about the butterfly rash on my face (which incidentally has been much better after 7/8 months on Plaquenil), she again brushed this aside with a comment, "It's not Lupus just a Lupus type rash"!!!??? She then suggested I stop taking Plaquenil "to see if it came back". When I asked about a new problem, extreme pain in my right hip, without looking up from something she was reading she said - that's just Bursitis. Contradicted so many other things that I left the appointment feeling utterly deflated. Last week I phoned the rheumatology support nurse for advice. She went through my notes, said that I had undifferentiated autoimmune disease and explained that so many immune diseases have similar symptoms but the treatments are usually the same at first. She also explained that in time the condition could develop into one or more of the immune diseases. After that I feel much more positive. I may not have got the diagnosis I was hoping for but it doesn't really matter. I will deal with the symptoms as they arise and see what develops. In the meantime I will read everyone's posts because there is a wealth of shared knowledge out there and that helps a lot.
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