Hi everyone. I apologise in advance if this post is full of self pity but I feel defeated, depressed and very anxious. In March I saw a new Rheumatologist. I was hopeful as he specialises in CTD. He did not have my notes but listened to me about my constant mouth, throat and genital ulcers, pain, rashes, lack of sleep and constant infections. He upped my Hydroxychloroquine to 600 mg daily. After two months I had a very bad fall with an egg type bump on my head, a haematoma on my bum, bruised ribs, arms and legs. My balance is very poor. At the same time I posted here about the increased Hydroxychloroquine and when people expressed concern I checked my Amsler Graph. It was wavy with grey patches. I went to the Optician who diagnosed macular odema and impaired vision in my lower left quadrant field of vision. I attended the Macular Unit five days later and they saw no problem with my vision. Tuesday I returned to see the Rheumatologist. He told me he was straight and I welcomed that until... apparently he believes that my Fibromyalgia anxiety invented the odema?? He said he has a few patients like me who get referred for everything and anything and they find nothing because it is all Fibromyalgia. Without examining me he said he thinks I have had crap diagnoses and bad advice even from London ( St Thomas) and that he does not believe I have Lupus or Bechets or APS just Fibromyalgia whether I like it or not. I have been taken off Hydroxychloroquine now. My mind is racing. I was first diagnosed with Lupus in 2009. I was very ill bedridden screaming with pain, covered in raw rashes with ulcers in my nose, mouth and throat. In 2010 APS was added and Raynauds. In 2011 Pernicious anemia, Underactive thyroid, hypertension, tinnitus, trigeminal neuralgia. In 2012 I had a new Rheumatologist who disputed SLE and diagnosed Bechets and Fibromyalgia. I asked for a second opinion and went to St Thomas’s who confirmed SLE, APS, and vitamin D deficiency. Now I am told I might have had an “autoimmune episode” but my bloods are normal now. He says he does not even think I have UCTD at all. I am confused and scared. I have spent years coming to terms with having such diagnoses. Can it be that I am so disturbed I imagined it all? My Optician is sending him the images and report of the macular odema but I really feel it will do no good. Your advice would be so very welcome.
Despairing after a new Rheumatology Visit - LUPUS UK
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