Following living with recurrent large painful mouth ulcers within the mouth and on the tongue since 2004 I was tested privately a couple of years back for Behcet's at St Thomas's Hospital in London. The tests included blood tests, eye checks and a lot of questions. The results of which were inconclusive and it was deemed unlikely that I had the disease.
However since then my health has deteriorated somewhat with more of the Behcet's type symptoms becoming noticeable, large non-oral ulcers now appear in other less accessible embarrassing locations, minor skin damage results in pustules, aching ankle pain occurs suddenly and the pain disappears equally as quickly as it came on and most worryingly of all I had a DVT occur in May this year, which very unusually had none of the elevated D-Dimers (a small protein fragment present in the blood after a blood clot is degraded). That was first for the hospital that treated me and has meant that they had rewrite their rule book when it comes to diagnosing DVT's. All of which makes me think maybe I do have Behcet's.
I am now going back to my GP's practice and going to try to steer them into getting me referred again. I am now reading more about Behcet's and I have to say I do fear for the future. Living with ulcers was bad enough, but with all of the other symptoms now rearing their ugly heads I was wondering how people cope and what sorts of treatment (if diagnosis is confirmed) I can expect?