I'm have neuro bechets (diagnosed September 2014). I am back in hospital again since December 3rd. This is my third time in hospital in 15 months. The first time I had a clot in the central vein in my brain which led to diagnosis, the second time I had clots develop in the back of my head. I was admitted this time with internal bleeding (perhaps from ruptured ovarian cyst or warfarin) I had an exploratory operation to investigate cause of bleeding but there was no clear cause. My INR I was 7. Drs got it all under control though and I was about to be discharged when I developed spiking temperatures. Drs concluded there must be an infection and did various tests and started me on antibiotics. After 48 hours I suspected a bechets flare and I said this to drs. They bascially didn't believe me (I am in a general hospital in Dublin, Ireland and they have basically very little knowledge of bechets). When I insisted they carried out a CT scan which showed inflammation/vasculitis in my veins in my neck -where a central line had been inserted to give me a blood transfusion on admission. So then rhumatology dept got involved and confirmed bechets flare and started me back on steroids. I started to feel better and was so relieved to be getting the right treatment. Drs continued antibiotics as a precaution. My INR which had stabilised, has now gone back up to 5. I have made a decision myself to stop all antibiotics as I know this can cause a higher INR. I am at my wits end trying to get drs to believe me and having to go against their advice as I know they have very little knowledge. Has anyone else been in this position? Also does anyone have experience of the bechets hospital in London and would they recommend I try to get seen there? I am so worried and upset. I don't know if the disease is getting worse or if in fact I'm not getting the proper care in Ireland. If someone could please respond to me I'd so appreciate it. My family are great but I feel so alone. I don't know anyone with this disease. Sorry for the long message. I wish you all a happy Christmas. Thanks, Mary.