Since I was a youngster I was plagued with horrific mouth ulcers, these were treated by many methods, lozenges, lotions, cautery and much more. I was accused of bad mouth hygiene, bad diet, even scratching my mouth inside with boiled sweets! Early in my teens the genital ulcers presented themselves with vengeance, accompanied with joint pains, neurological problems, ophthalmic problems and awful skin lesions. It was the early sixties, and no one had any answers. I spent some weeks in a major neurological unit, having terribly painful injections which didn't seem to help. Finally my parents were told I'd have to live with whatever was causing the problems. As I'd been brought up in a remote part of West Africa it was even suggested I had some weird tropical disease. Time passed, I managed to train as a nurse, and nursed both my parents through terminal illnesses. Perpetually exhausted and in pain, my body seemed to react by having more frequent attacks and I became quite incapacitated. Eighteen years ago a terrific Consultant diagnosed me, his diagnosis has subsequently been confirmed by two other specialists and also included the probability that I have Fibromyalgia as well. Knowing I was no longer being considered a hypochondriac and that I was really being taken seriously I started to take on my condition and learn about it, in order to have a better quality of life. My oral ulcers have eased a lot, but I believe that because I now wear dentures these don't cause the microscopic scratches that my real teeth did to the mucous membrane which then became ulcers.( just my theory). I still get oral ulcers, but suffer much worse ulceration genitally and in my nose. The headaches are pretty unbearable and the neurological and rheumatic problems drag me down. My eyes are letting me down, and there is so much more. But I have a fantastic GP, Consultant and above all a Society with specialist knowledge who take care of me, but most of all I take care of me by finding out what best works for me as an individual, accepting there are good and bad days, and especially making the most of the good days. I know I cannot beat this disease, but I can live with it and make the most of the help available.
Loneliness and isolation are the biggest problems I personally face, but this is where sites like this are great, I also try to keep very busy, health allowing, and in the future hope to get people like myself to get together without just talking about our health even though we are aware we have the same diagnosis, to just chat or maybe even share interests.
That's me, 60 in June, going on 18, old crock ,but young at heart, this disease is not going to deny me a fulfilling life.
Bless everybody who suffers this disease/syndrome, the patients, the families, friends and the medical staff who so want to help us but don't always have an answer. Above all THANKYOU to The Behcets Syndrome Society. You do help more than you can ever know.
Medication I have found successful
please help, im 17.
Suspected Behcet's
Please help me - how does the diagnoise work?
