we are wondering if a visit to a centre of exc... - Behçet's UK
we are wondering if a visit to a centre of excellence would do us any good, has anyone got any experience or views on theses centres?
it was certainly very good for me in terms of moving to a diagnosis.
If you type centre of excellence in the box that says search in the top right hand corner you will see all the threads that have been written by us all.
I also found it quite comforting meeting other people with BD, as it was quite informal and we all got chatting in the waiting area.
Good luck, Jill x
Hi, I am just wondering if these centres of excellence that are often mentioned, if they actually have specific Behcet's specialists and specific clinics devoted to Behcet's and/or vasculitis?
I live in Canada, and we have none of these centres here, We just have teaching/research hospitals that have arthritis clinics-- the one here in my province is mainly devoted to RA and SLE. The doctors in the arthritis clinic don't know anything about Behcet's or even that it exists, and they know very little about vasculitis. I lucked out to see a rheumatologist at a private clinic outside the hospital that only knew a little bit about it because he saw it a couple of times during his residency at Mayo Clinic in the States. He was only able to diagnose it though and doesn't know what to do next to help me. I am basically on my own now and am only receiving Remicade which he will probably stop in the next month or two because I'm no longer his patient. The sad thing is that now I cannot see any other rheumatologist because I already saw one. No other doctors here know about Behcet's either. I am a bit worried what will happen to me without any treatment and/or monitoring, especially because I haven't really even gone into a state of remission since being diagnosed two years ago.
I'm due to go to Liverpool in July and was told they specialize in be as I've never been before I would like to hear what people think and does anyone know of a good moisturizer I've tried loads but haven't found a good one yet
Hi Hun,
I get a large 500ml container of Dermol 500 regularly from my GP. It comes in a pump dispenser bottle and I use it for all skin conditions but especially as I have badly scared and thin skin on my legs due to a bad ulcer problem a couple of years ago.
It is similar in what it does to Diprobase but has the added advantage of having a bacterial agent in it which really helps to keep infection away on skin that is not perfect.
I get mine on repeat prescription so maybe ask you GP for it ?
tootles xx
PS I also go to Aintree.....lovely bunch of peeps and Prof Moots if great !
My daughter goes to St Bart's in London, not too sure on what we think at the moment although we have been attending for a while now, she was referred from Hammersmith to there, but they still cant get anywhere near remission stage and they cant work out why, all they seem to be doing is changing and adding medications, whether this is the norm or not we are not sure, i personally would like her to go back to Hammersmith, but seeing a professor you would think would be more superior.
I attended the one at The Royal London 3 times and only got to see 2 different consultants and wasted alot of time there but was early days so might be better now
I attend the Royal London and was seen by two specialists with
another appointment again in May 213. I have had to have all my blood
tests re-done even after my Rheumatologist has confirmed Behcets.
I have been left on Azapthropine for now. I do hope that the repeat of all the
tests is worth it. I am keen to start medication that can hopefully
provide some more stability in my condition.
I did find the staff to be welcoming and friendly though.
I wish the waiting room chairs were more comfortable and there was a TV or something
you can do while waiting. I was quite tired on the day, thus found it a little
frustrating sitting on hard hospital chairs.
Jen.
JaJames (Jen) good call about the chairs, they are awful at the Birmingham Centre too but I was so impressed with everything else that I sort of tuned them out.
A coffee machine would also be appreciated, its a good walk and I really dont walk unless I have to these days. However, I will know to pick one up on my way in next time.
Its funny but you would think the specialists would understand how much it hurts sitting.............Jill
hi Jill. I understand that there are new chairs in order for b'ham and there is a coffee machine there now so things should be getting better.
