After a journey that included a GP that refused to believe I had APS even after Prof D, Cruz wrote with my diagnosis, being struck off by said GP, seeing someone else during Prof Dcruz, absence from the lupus unit who refuted my daignosis,having it reinstated when he returned,but still being discharged, being re referred but receiving a letter saying that I didnt need to be seen but the nurse would give me a call to discuss my concerns, no call arriving even after spending 3 months leaving messages on the nurses answerphone,developing new symptoms and going to A&E to be told I need to see my consultant,being unable to get hold of him even after telling his secretary twice that A&E had said so, I finally went private and saw Prof Khamashta, who referred me to himself on the NHS and when I saw him for my first NHS appt he said that he was sorry that I had had to go through that, and that it should not have happened and that he would not discharge me and would sort me out as he thought there was something else other that the diagnosis,s that I have already )APS, Fibro, Sjorgrens and thoracic outlet syndrome)
He ordered a brain MRI and a full bloods and I was due to see him with the findings in July.
I found him to be a very warm and understanding man and felt happy that I was to be under his care
However, I received a letter in the post moving my appt(which I did not mind) and noticed it had also changed who I was to see to a Dr I have never heard of (which I did mind)
I rang the appts. desk to say that I would only see Prf Khamashta even if I had to wait longer but was informed that he had left the unit, in fact has left the country and will not be back for at least a year if at all.
I am worried that I am going to go round in circles
I know I am not the only one who will be sad that he is gone