I am newly diagnosed after having severe neurological involvement with behcets and have other symptoms including mouth and genital ulcers as well as joint pain and pain in my limbs. I am under a consultant neurologist specialising in the syndrome at the moment but he doesn't listen to what I say and has cancelled more appointments than I have had which is a pain as I have to travel into London to get to these appointments.
Does anyone know how I could get to see another specialist and what is the best way to go around it? I want a doctor who can treat the symptoms I have as I am only 21 and I want to be able to move on with my life
Lauren
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lauren92
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I have recently changed consultants because of the same problem. A rheumatologist consultant finally diagnosed me a couple of years ago after being ill for many years and being passed around many different medical departments. My consultant was extremely nice but didn't take much notice on what I was saying and never wrote things down. Every appointment I had to repeat everything I had said the month before. I was also having neurological problems and was losing use of my right leg and got very ill to the point where my own G.P's were doing house visits all the time. My doctors were always trying to get hold of him and never succeeded and had never had any feedback from him about medications etc.
Eventually my doctors referred me to another rheumatologist and I am also under a neurologist because things have been getting worse. So I would definately go back to your G.P and ask for a referral to see another neurologist or even a referral to one of the three centres that caters for Behcets sufferers. There is one in London and even though I don't know much about them there is plenty of information on here in past posts.
Please don't suffer in silence like I did. I didn't ask to be referred because my consultant was nice and I didn't want to make a fuss but he was too laid back. I was also in a lot of pain which I now know was from nerve damage and he told me to take Neurofen which my neurologist thought was terrible because she said I needn't have suffered for as long as I had if he had given me proper pain relief.
I hope this helps a bit and I really do understand how you feel. It is very frustrating having an illness that people don't really understand and don't realise how ill you get. I have had a few comments from people who say what's a few ulcers and don't even think about all the other problems that go with it.
I hope you manage to see someone else soon and that things start looking up for you.
Hi Lauren, you don't say where you live but there are 2 options. You need to ask your GP to refer you to one of the centres of Excellence at London, Birmingham or Liverpool or to a rheumatologist at a good hospital. Find the ones nearest to you and go online and find which rheumies specialise in BD. I'm sorry to say but this is a very difficult disease to diagnose and many docs and other proffessionals have different opinions. I have had BD for 27 years now and if took. 12 years to get a diagnosis but things have definitely improved since then. Take this site, the centres of excellence and more knowledge about BD, it's symptoms, treatments and meds. It can take time and it is not an easy road but you sound strong and intelligent......you will get there eventually. Stand you ground re refererrals and take a look on behcetssyndromesociety.co.uk and please keep in touch with this site. We are here to help if we can with advice and tips and also to listen if you are down and we also have some good laughs!!! !
Take care
Hugs and Smiles
Billi
Hi Lauren,
I understand this is a difficult and frustrating time for you - it's early days regarding treatment - you were only diagnosed a few months ago. It can take time and patience to build a relationship with a Doctor and it could be that there hasn't been enough time for this to happen yet.
You thought your Neurologist at the Royal Free was going to refer you on, so perhaps you can remind him of that when you see him, or ask via his secretary, or perhaps discuss it with Jean.
My guess would be that he was thinking of referring you to the Centre of Excellence. I expect it would be much better for you to travel from Surrey to London to see several Specialists on the same day under the same roof. I don’t know if you got in touch with Jean or if she sent you the information mentioned previously, but either way I would urge you to get in touch with her to discuss your situation
You mentioned that you were interested in the London Support Group – perhaps it will help if you go to the meeting which is being run by Jean next week - Tuesday 2 July 2013 at the Centre for Psychosynthesis Educational Trust
92-94 Tooley Street
SE1 2TH
020 7403 7814
Did you get in touch with the Surrey Support Group?
I suggest you explore your options before making a decision about referral to another Consultant. There is help and support available to you and it will help you to make an informed decision about what your next step will be.
Thank you for your replies. I guess I've not fully accepted the fact that I have Behçet's and its
I'm going to have for the rest of my life. I can't make next Tuesday to the London support group unfortunately as its my birthday! I am going back to my GP as don't feel a neurologist is the correct consultant for me but obviously I am going to still see him just don't have another appointment for 3 months. I did mention about him referring me but he said that he would need longer to discuss that with me and he would want to wait a few months as I am still newly diagnosed.
How would I get in touch with the Surrey Support group?
I have recently just change consultants and it was a very easy process. I wanted to be refereed to the Specialist vasculitis centre in Cambridge as I'd heard very good things about them and felt this would be the best for me... I called them up and they just asked me to go to my GP and get a referral letter... So I did and I have my first appointment on Monday!
I'm not sure where you live but I'm living in Epsom so I'm travelling from there to Cambridge... If you would like their details I can message them to you they see patients from all over the country as they are a specialist centre.
Give Sue a call and have a chat, Sue Reid, Tel: 01223 586 796. She will just ask you to get a referal letter from you GP and then once she recieves it she sends you out an appointment.
I had my first appointment on Monday and they were VERY good... very thorough. I'm back in 2 weeks to discuss new treatment.
The clinic is called Clinic 12... I may see you there
Moys xx
Good morning Lauren – many of us understand how you are feeling.
Please try not to worry too much now – you WILL see the right people and you WILL get support. The ‘rest of your life’ issue seems to be bringing you down (understandably) but you can’t know what the rest of your life will be like right now and it could get better.
Symptoms, severity and duration vary enormously between patients. What you read or hear about from other sufferers is not necessarily going to happen to you. Remission is possible, good management and control of the disease is possible. There are sufferers who work and lead full and active lives.
As I said before, it’s early days, it could take a while before you get the best treatment, management and lifestyle advice for you. Doctors have to get to know you just as you do them. With a multi system disease this can take time but it’s worth the wait to get the best advice and support. If you read back over this thread:
It will remind you that Jean is available to support you, and Zebra has offered to help too.
I believe there is an online group for people of your age but I’m not certain – Zebra will be able to tell you and give you details.
The details for the Surrey Support Group are: alison.jeffery@live.co.uk
If you have been diagnosed with Neuro Behcet’s then a BD Specialist Neurologist probably IS the best person for you see. There are not many of them and some people have a very long wait to get an appointment with one. But this is probably not the ONLY person you need to see. A multi system disease benefits from a multi-disciplinary approach.
If you really feel you are not getting what you need from this particular Doc then of course you have the right to change, but be prepared you may be told the same things.
Your main Consultant won’t necessarily be a Rheumatologist; Have a look at the Medical Advisory Panel
to get an idea of the type of docs you may see. You can get advice about recommended Specialists directly from The Society if you wish.
A Centre of Excellence is probably your best option at this early stage of your BD journey and you may even find that the Neurologist you see now attends one of the Centres. When Specialists from different Disciplines are under the same roof your care can be discussed amongst them and a treatment plan discussed with you – personally I would still recommend this as your best option and getting in touch with Jean would give you all the info you need about that, including how to get referred. I’d definitely talk to either her or The Society before going back to your GP – he may not know who is the most suitable person/place to refer you to.
Meanwhile, you could stay registered with your Neurologist so that you do at least have a BD Expert looking after you while you decide what to do.
We all appreciate that this is a frightening, worrying and frustrating time for you - keep posting - share your thoughts and feelings, ask your questions - many of us have been and are currently in your situation and it can be a big help to share.
Hi Mark, I see you live near Cambridge. I run the Cambridge and the east support group. There are many of us here. I can't recommend Dr Jayne's Vasculitis Clinic highly enough. He has seen over 240 Behcet's patients and the whole team is excellent. Do feel free to contact me.
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they see patients from all over the country as they are a specialist centre. 
Home alone
Is this Behcets, please help!
Am losing the will to live will I ever get a final answer?
To go sick or not to go sick ...that is the question ?
How do you know if your ulcers are related to BD?
