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Written by a patient
28th January 2017


I went to see Dr Camilleri for a diagnosis via Benenden Health Care in 2003 when I was 32 years old with regard to searing and radiating pains that I developed over the course of a few months in my hands, arms, feet and knees. He examined me and he told me that I had hypermobility. He refused to see me in his NHS clinic telling my doctor that he would not be reviewing me in his rheumatology clinic. The pain in my body continued unremittingly. When I looked back at my medical notes a few years on I noticed that my GP of that time had written to Camilleri even after his diagnosis of hypermobility about my pain and that the ibuprofen was having no effect and suggesting that I might need steroids or something but Camilleri still refused to see me in his NHS clinic. I then made my own research about Hypermobility and insisted that he refer to me see Professor Rodney Grahame at his hypermobility clinic in London. Rodney Grahame confirmed the diagnosis of Hypermobility, prescribed amitriptilyne to me for pain relief and referred me back to a podiatrist in Wales also. Professor Grahame wrote back to Dr Camilleri with all this information but still I never heard from him again. Over the years since then I had to manage all of the ensuing 'hypermobility' symptoms myself and with no specialist overseeing it all. My fingers intermittently swelled and were in pain, my feet started to deform and a very few years later my podiatrist referred me and I was offered surgery by an orthopaedic surgeon called Mr Hemmadi for my feet but decided not to proceed. The fingers on my hand then started to lock and dislocate as well and I attributed it all to the hypermobility diagnosis that Camilleri had given me - and I supposed that there was no need for me to be reviewed to a rheumatologist in Cardiff as such because it had been refused. The locking and dislocating sensations in my hands got so bad that I had to have hand surgery to my right hand. A year and a half later I developed serious subluxation of my left hand also so I booked myself in to see the hand surgeon Mr Andy Logan again and he noticed extensive cartilage erosion as well as bone erosions in his xray of my hand. Fortunately, Mr Logan is an innovative surgeon who had set up joint clinics with a rheumatologist called Mr Julian Nash also in Cardiff so Mr Logan referred me to his joint clinic with Mr Nash and in March 2015 got my diagnosis of an advanced RA which had remained undiagnosed and untreated over many years... The constant pain that I have had in my hands since 2003 began to lift and practically disappear a few months after Dr Julian Nash started me on steroid injections and immune suppressant drugs including high dose methotrexate but so much damage is already done and no cartilage at all between some of the joints in my fingers...

Trust
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Listening
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Recommend
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