As some of you may know from previous posts/questions that I recently saw the rheumatology doctor. He ordered a load more tests and offered the 'diagnosis' of sjorgens serolgy with lupus features. Essentially could be one or other or both but further investigations needed. Treatment has started with Hydroxychloroquine and the potential to go on to methatrexate later - depending upon findings of all the others tests. My results thus far are ANA positive, anti-Ro and anti-la positive, rheumatoid factor negative on 2 occasions. Platelets consistently below normal since December 2012. Last count was 134. Neutrophils consistently below normal since December 2012. Awaiting anti-dna antibodies and a small joint scan. I have a long history of skin sensitivity in the sunlight, urticaria, chill blains, tendonitis, plantar fasciitis, joint pain, anxiety for no apparent reason and since last August significant fatigue and brain fog. I went to see the GP today because she asked me to do so once the letter from the specialist had arrived and as a check before I go to Hong Kong on Tuesday. She showed little interest in me. I asked her what the routine is likely to be in terms of check ups and blood tests. Fair enough she didn't really know but she told me that I am unlikely to have lupus and if I do then it will only be the mild form, which will only cause mild joint pain. She told me not to read anything about lupus. I felt patronised. On one level because I think it is essential to understand what might be going on with my body and two because I am a nurse and already have quite a good understanding. Have you all had such experiences? Should I stop reading and just wait to see what the doctors say?
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