I had seen 4 doctors over those years and none could tell me what was wrong with me. Instead they chose to test me for other diseases and made me feel like I'd done this to myself. Finally one doctor referred me to a rheumatologist, and it was her that did a biopsy on one of my throat ulcers and decided it was behcets. I had ulcers in my mouth and throat almost constantly before that time. I am now taking Colchicine daily , steroids when necessary , but what I have found is that if I can catch the ulcers in time, I can break open a tetracycline capsule, dilute it in a bit of water and rinse in my mouth for about 3 minutes, it helps quite a bit. The doctor says she doesn't know why it helps but as long as it does she gives me a prescription for it. Of course I have had twice this year when I used steroids because the ulcers got so bad, but even so twice in a year is better than constantly.
I'm not sure I quite understand this disease or how I got it. the doctor says it is genetic, but again I am not a candidate for where it comes from. I can go back over the years and see i had been suffering from it for quite a few years, I was just being treated for each individual symptom rather than what i should have been treated for.
Am I angry ? Yes..Very..because I was treated not so nicely in the beginning, before they had completed all their tests, even though I knew there was no way I could have things they were testing me for. I sit and read all these other letters and wonder...gee..when is this going to happen to me...will i get these symtoms also...and I'm not looking forward to it.
Oh...I am 45 and living in Chicago. I know of no one else that has this....my doctor says she does have 4 patients with it though. Well I just wanted to share my thoughts and experiences with you since I have finally found this site and some info...Thank you