Back in hospital again -question re London COE

[mtmunster]

Hi all,

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.

[Papapickle]

Hi, I am so sorry to hear of the problems you have. Did the scan show any inflammation?

I have had similar experience in that the doctors are keen to treat everything separately and I struggle to get them to make the link between the two.

Since my last flare I have been left using a wheelchair whenever I go out. It's so frustrating.

I wouldn't recommend the Behçets Coe in Birmingham. They are useless. But then you may find different.

Happy to chat more via pm if that helps, I know how lonely this leaves us at times despite the most amazing family support.

Take care.

Papa

[mtmunster in reply to Papapickle]

Hi, thanks so much for replying, I am so very sorry to hear about your wheelchair. How do I PM you on this?

[mrsmith]

Hi

I have also been diagnosed with neurological Behcet's. After many years of having Behchets it has shown signs of activity in the brain. Unfortunately this has resulted in a couple of trips in the back of ambulance to A&E.

As you have experienced, because Behcet's is rare most health professionals you come into contact with are not initially aware of the disease or it symptoms.

I had another attack/flare which once again resulted in another ambulance/A&E/hospital admission. However this was a better experience as hospital doctors could contact the London Bechet's centre for advice and a medical plan (I am a patient). Without this level of support and help it

's likely that a diagnosis and action plan would have taken longer.

I have had a very positive experience at a Betchets centre of excellence. Knowing you have a team familiar with the disease rather than a single professional who maybe aware of the condition is for me, personally more reassuring.

[mtmunster]

Hi mr smith,

Thanks so much for your reply. Do you mind me asking, are you primarily under the care/regular review of London COE or did you see them for the purposes of devising a treatment plan which is then followed by the more general hospitals when you are admitted? It sounds like attending London COE has provided good clarity in terms of your proper care. I am happy for you in this and it encourages me. I hope you are doing well at the moment? I wish you a great Christmas. Mary.

[mrsmith in reply to mtmunster]

Hi

Yes I'm under the care of the London Behcet's Clinic (have been since it first started).

They coordinate with the hospital, give them advice and recommended a treatment plan..... basically intravenous steroids. Just comforting to know you can pass the hospital team onto health professionals who know about the disease. As I've found through experience, very few health professionals know specifically about Behcet's. When you present with strange symptoms at A&E or in the NHS/hospitals in general, they may not know what they are dealing with or how to begin treatment.