What's my future? Only been diagnosed 4weeks, ... - Behçet's UK
What's my future? Only been diagnosed 4weeks, Trying to get my head round beschets and the future. Would like to say hi.
Blimey thats a tough question and I am not sure anyone can answer that.
I'm pretty new myself, but we all seem to experience Behcet's very differently.
I would like to welcome you to the site...its a very friendly place.
How did you come to be diagnosed? Was it through a centre of excellence?
Jill
Thanks for replying. Suffered with mouth ulcers and other places! My eyes are my main concern although my leg is killing.feel for my wife and young kids. Not sure where to go?
hello things should get better they most certainly did for me please bare in mind that with any medical condition stress will defo make it worse. what i have recently discovered as a pain relief for my mouth ulcers is coke, the drinking type! water just burns them. as you are newly diagnosed you probably will have flare after flare well thats what happened with me for a whole year. untill one day i had enough of the meds and started weaning myself off everything againt the hospitals advise but ever since ive not been no where near as bad. but do take the advise off the hospital cos everyone is different and i have had to have courses of steriods for my feet inbetween. xx you will manage if you try to have a positive outlook and the support of your family
Hi there and welcome. I have had behcets since 9 and am 39 now. Behcets effects everyone differently and severities are varied. I have it quite severe and get many symptoms and some nasty. I no longer work but some people hold down full time jobs. Time will tell hunni but i have had good outcomes on some medications so hope is out there for even for severe cases as new treatments are being tried with good outcomes. It is a life long disease but can be managed.
Take care hunni
Big hugs
There are 3 excellence centre recently opened one in liverpool one in birmingham and one in london. These have funding for medications. If you go to your dr who diagnosed you they can refer you. If you look online on behcetssyndromesociety.org they are a great site with everything you need to know. X
Sorry for my ignorance but what are the centre or excellence? And where are the? I'm being treated at my local hospital and my go doesn't even know about beschets!
Sorry gp he's going to read up. Brum, I'll ask the q's. Much thanks.
Sorry gp he's going to read up. Brum, I'll ask the q's. Much thanks.
I go to the one in Brum, and the email for your GP is behcetsbham@nhs.net, they respond quickly. Appointments come through in around 6 weeks.
They are manned with expert rheumatologists and opthalmologist, and you can get everything checked in one appointment.
I had probelms with uveitis too, but its gone away now after steroids.
Hi Coach
Welcome to the site and group which you will find very supportive. Sounds like you were lucky to get diagnosed. My new GP didn't know too much about it either but he is very supportive now.
Lesley
Welcome to the site, its my daughter who suffers quite bad, she is 25 and it took many years to get a diagnoses, she used to go to our local hospital but they didn't know enough, so they referred her to Hammersmith in London for a while, and because she was a difficult case they decided to refer her to the COE in St Barts in London, still cant get it under control tho, its a tiring and long journey but everyone suffers in different ways. Good luck and we are a friendly kind and helpful site. x
Hi Coach,
A warm welcome to the group. Don't panic, we've all been there so you are not alone.
There is a book called "Essential Guide to Behcets" which you or the GP might find useful in answering some of your initial questions.
Beau
Welcome to the group.
This disease affects everyone differently, and so it is difficult to answer your question.
I think that it is a good idea to forget that you have it, and get on with life as usual, if it is at all possible. You have been diagnosed, so you should be getting the correct treatment to alleviate your symptoms. You will note that there are blogs from members who are having troubles with their treatments. These problems should be dealt with by the specialist consultants and GPs as we cannot give you any medical advise, but feel free to have a winge!
Some people are very scared at the fact that they have an incurrable disease. The research being undertaken at present does not offer much hope for a cure, but I believe that we should all get on with life. Of course, there will be times when we are not at all well, and although the medics will, I am sure, do their best for you, this site will always be helpful at getting you through these problems.
There are quite a few people who subscribe to this blog who have severe problems with BD , and there are also those who only have the odd problem, and it is good to have others who understand our plight.
Keep Calm and carry On, I regard as a good motto. xxx
Dear Coach76,
Welcome to the Forum!
My name is Jean and I am the Support Worker for the London Centre of Excellence. I see that Infliximab74 gave you some really good advice and suggested you ask your GP for a referral to one of our centres. I'm not sure where you are living, but if you message me Ican let you know which centre covers your area and what you need to do next.
Unfortunately, it is not uncommon for GP's to have little knowledge about Behcet's ,as it is very rare and they don't come across it often. The Bechet's Society is an excellent resource for information on the disease, and you can print out information sheets for your reference and to bring along to your GP. The society also has face to face support groups, depending upon where you live and telephone support,7 days a week.
I'm really pleased to see all of the supportive messages and warm welcomes you have received from the group.
Best wishes and I look forward to hearing from you.
Kind regards,
jean
Hello, mouth sores, genital sores, inflammation inside the eye (uveitis, retinitis, iritis), skin lesions, inflammation and lesions of the GI Behçet's harvest, arthritis, neurological symptoms, as well as much more. Prone to attack blood vessels, and blood vessels everywhere in our body, because the symptoms can pop up anywhere. Do not lose hope to friends around the world suffering from this disease. Where there is no hope in life is not. I'm trying hard to be the hope of all the patients.
Welcome to the forum coach 
Everyone is very different and on different meds. My only advice is to take one day at a time, it will take a llittle while for whatever meds you are put on to kick in anyway.
Best of luck!
Pickles
Hi,
Firstly welcome to the forum. It is a great place to chat to others with BD. I was diagnosed last year. If you need to have a winge this is the place to share it. As for what the future holds, that is a bit of the unknown I'm afraid. Before I got ill I was a fitness instructor, so having no energy was all new to be. Going from being fit and healthy to having days where I can't get out of bed has been both physically and mentally hard to deal with. I am learning to take each day as it comes as things can be very up and down.
It might take a while for docs to get you on the right balance of meds too. I haven't quite got there yet. Whilst Aza and Colchicine have helped I am still getting flares.
Good luck. C x x
Hi Coach 76,
Welcome to this site, I have only found this site this year and have every one to be so friendly and supportive.
I have wonderful drs and a gp who tells be that he can help with scripts and emotional support.
I have recently read a form from a dr that I shouldn't have. I am applying for the blind pension and you need a medical form from your major dr, for me that is my rheumatologist. We gave her the form and an envelope with stamps to return it but she gave back without being in an envelope. My ophthalmologist asked me to get it out to ask for some dates and I did the wrong thing and asked my daughter to read the all the form. It doesn't fill you with hope and she was asked my expected life expectancy and had ticked less than 2yrs. Maybe we don't really want to know.
My advice would be don't be fixated on how long you will live but live each day as it comes and take every exciting opportunity now!
Good luck finding drs you can work with
Felicity
