Centres of Excellence

Hi does anyone know where these centres are located. I've been struggling with Behcets for eight years now and it's been bloody aweful (excuse my language). I would sooo like to find a specialist I can really confide in and trust.....seems to me all the different doctors just want to see how different medications work and I feel like a ginea pig. Very down atm even though I'm on anti-depressants. Not sure if others feel like this or not but It's as though I'm caught up between horrible symptoms that come and go and guilt if I have a few good days because others have to work so hard. I really want to reach out for a friend or support but then I pull back because of feeling so misunderstood and to put it nicely 'a complete misfit'. Can anybody understand how alien I feel trying to live a completely bizzare life with Behcets? Many thanks.

G

19 Replies

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  • The Society can tell you more about the Centres of Excellence behcets.org.uk/menus/main.a...

    and also recommend Specialists in your area. I wonder if you would benefit from joining a support group or using the helpline. The Society can help you with all of this.

    Unfortunately, as there are no (I think) medications specifically for BD and because symptoms vary in occurence and severity and from patient to patient, it is often a case of trying different medications until those that work for you are found.

  • Aw Gisele, you do sound in a rotten place at the moment. I suspect that the majority of us know exactly how you feel because I think it comes with the territory :-(

    Try not to feel guilty on your good days - you deserve them! You should have more of them!

    I don't feel a misfit but I do sometimes feel a complete fraud - I can't do this and I can't do that because of an illness that nobody has heard of and that is, to all intents and purposes, invisible.

    You are not alone - just take a look at all these people who have the same or similar problems. We understand - to be honest, we have no choice but to understand because we go to those dark places too. Try to see this group of friends as a support group and, for more one-to-one support use the Society. They really are very good and they also understand because they either have Behcet's or are close to somebody that has it.

    And if it helps - I'm on antidepressants too, have been for years. If that's what it takes for me to deal with this rubbish then so be it xx

  • Thank you for your answer, having been reading the question about memory loss I am now in bits because I have had so many neuro symptoms and memory loss is one of them aswell as muddling up words or sentences....thought I was going slowly mad!!! I'm a single Mum with 2 boys and they can't understand what is going on they just think their Mum is scatty. Sometimes I can remember things like they happened yesterday and sometimes I will forget what day of the week it is or what was told to me only a couple of hours ago....it's so humiliating when people look at you as though you're a raving lunatic and I feel very very isolated....I've looked on the Behcets website but I can't find where the centres actually are, only that they are pleased to announce that they are up and running. I'm so scared that I'm going to forget everything including my children and I'm only 38 :(

    G

  • An email to the Society (info@behcetsdisease.org.uk) with your details will gain a response. All members of the Society are updates each quarter with this information via the Society newsletter.

  • Gisele

    31 minutes ago

    Delete

    Hi sorry for such a late response, I would appreciate any kind of support be it councilling or in a group but unfortunately it seems around here, namely Grays in Essex I may as well say I am suffering from a disease from Mars because thats how a majority of doctors deal with it round here, as do ppl in general. My eyesight is failing me, I feel as though I'm losing my mind, memory and mobility and in the mean time I have to pretend everything is ok and I'm coping on my own with 2 teenage boys and to boot I have got the snotty secondary school breathing down my neck. Im very very unhappy and feeling as though reality is day by day slipping further and further away from me and having very scarey images of ending up in a straight jacket in a padded room....Im feel as though I'm becoming more and more detached from society and even my friends because no-body except you guys on here understand what this sodding illness is all about!!! I have had several thoughts of ending my life because I cannot cope like I make out. I have to knock myself out every night with sleeping tablets just to stay safe and away from my own mind and solitude. I seem to never be able to help people understand what is wrong with me on a daily basis and the kids are exploiting the fact Mum forgets loads of stuff. Food has become my friend and foe all wrapped in one, excuse the pun. My face looks like a pizza my skin looks lijke an old lady's and I bruise or swell just looking at a mozzie or tripping over the dog. I've fallen down the stairs on numerous occasions, burnt myself accidently trying to cook and now sleep on the floor downstairs to prevent further injury. I was referred to Barts hospital which I thought at the time was a good thing until the day I was to go....I stressed and stressed because as usual I would have to go on my own and this terrified me as I would have to walk to the train station which would have caused considerable pain and zapped all my energy....I knew once this happened I would feel disorrientATED and vunerable....prob wouldnt make the train journey or if I did I'd end up somewhere lost and looking liked a depraved nutter!! I have missed several appointments because of this very thing...which as you will imagine annoyes the hell out of NHS staff (understandably so) anyway I phoned up Barts in Whitechapel and explained I really didnt feel up to making the journey alone and could I possibly have a later appointment so my kids could escort me to which they said no. I then asked if my doctor had referred me to the right place and was it the centre of excellence for behcets and could I speak to someone who understands behcets to which she replied I had only been referred to the pain management team for my bACK ACHE and didnt know what I was talking about???? I am very very frustrated and confused coz i was under the impression that a centre of excellence for behcets would be a little more helpful than this!!!! This website is the only resource I can find for behcets and i have seen numerous docs most of which blink at me vaguely and go ahead and advise me to go on to several serious medications that I feel are playing with my life and mind willy nilly. I have realized in this time (approx 8/9 years that I am nothing more than an anomoly for which the medical profession enjoy testing various medications on. I know I am probably being what seems a little harsh however that is how I feel I haVE been treated over the years..... I have no supportive family friends or even medics whom I can turn to in a crisis so I feel WHAT IS THE POINT of keeping going round in circles trying to get someone to sit up and see what a wretched situation I find myself in with 2 boys....should I have a stroke or end up completely blind what happens then??? I feel I have diminished responsibility as a mother and am now doing more harm than good trying to cope. I don't drink or

    smoke and I don't go out for fun....surely something has got to give!!!! I'm not organised enough to keep a continuous record of everyday of the last eight years and not able to express it all everytime I sit in front of a new consultant which seems very often....its not only exhausting but tedious and ultimately embarrassing and futile. I would give my right arm to be in contact with ANYBODY who consistently understands the trials and tribulations of this disease I dont want sympathy just someone to reassure me I'll be ok...we'll be ok... I'm shattered now after that rant.....I guess just writing it all down is as good as its going to get. Thank you for reading and sorry for depressing the hell out of you all who are also suffering. I realize I'm definitely not the only one although on an everyday basis coping with ordinary everyday things it does feel like i'm in a bubble bouncing round and the bubble is getting bigger and bigger. I cant seem to trust a soul my kids or even myself anymore and once upon a time I was a brave spirited and energetic individual who never let the bastards get me down!!!! Where did she go.........

  • Memory issues are not necessarily signs of neuro problems. They can be attributed to all sorts of things, medication, fatigue, stress - try not to add this to your worries, it could compound the problem. Try and wait until you are seen by a Specialist and mention it then.

  • Thank you for your input Tigerfeet, I have had a number of medicines changed over the years but still have the same reoccurrant symptoms. When I read about the memory question I could relate to it so accurately it made me cry instantly as though I have been carrying this heavy tense weight around for years and been misunderstood and somebody else knew exactly how it felt. I am so grateful for finding this site and people in similar circumstances to whom I can empathise entirely and should anybody need me as a shoulder to cry on then I am here.

    Kind regards

    G

  • IAnti-depressants are not all I take here is a list of my medications: [morning] 40mg Prozac. 500mcg colchocine.600mg Ibuprofen.20mg Omeprazole.Adcal-D3 chewable calcium. [Mid day]600mg Ibuprofen[Evening]600mg Ibuprofen.Adcal-D3 chewable calcium.500mcgs colchocine.[bedtime] Quetiapine 100mg.Amitriptyline 50mg.Zolpedem 10mg and throughout the day depending on the severity of pain I take 30/500mg cocodamol or sumitriptan, Hydrocortisone muco-adhesive buccal tablets for mouth ulcers, eye drops for when my eyes hurt due to being permenently dry and 7.5mg of Methotrexate once weekly......I have terrible tummy aches and headaches but no support because I've been told I don't need it as the illness is fluctuating. To make matters worse I'm beginning to suspect my 11 year old son has it and my 13 year old sone is has been suffering memery loss for years but is extremely bright in other area.....I'm sooooooo confused because Doctors in my area all seem to have their own take on Behcets and prescribe different drugs and it seems as though none of them actually liase with one another. PLease please help as this site seems more useful then anything I've come across in the last 8 years.

    G

    P.s thank you for your reply's and my heart goes out to those who are also expieriencing similar problems. May tomorrow be a good day for you all x

  • Hi, my daughter was under prof Haskard in Hammersmith hospital London, and also she is having her 1st appointment with prof Farida Fortune at St Barts in Whitchapel on Friday, if thats of any help, they both specialise in Behcets.

  • Hi Tamirra and thank you for your reply it was very helpful indeed. I'm sorry to hear about your daughter and I hope the prof. will help her as I know how aweful this illness is.

    Kind regards

    G

  • Gisele

    I know that seems like a lot of tablets but, do you know what darling? That's about par for the course for Behcet's sufferers. I take much the same - and I take far more co-codamol than is good for me.

    I said in one post sometime ago that I'm probably what is known as a functioning addict. And do you know what else? I was a very senior health professional before this disease took hold and I should know better, well, I do know better but it makes no odds.

    I think this illness is a great leveller - no matter what background we come from, how educated we are or not, what our particular symptoms are, Behcet's couldn't care less. It gets you in its sights and WHAM!

    I'm luckier than you in the fact that my children are now grown and I do have a very supportive husband. BUT financial problems persist because I can no longer work and, just lately, my jewellery business has had to take a back seat because I just haven't been up to it.

    My dad died in January and because I was unable to get up there alone I didn't see him before he went, which broke my heart because I hadn't seen him for a few years and I wanted to give him a hug that said all is well.

    I'm not telling you these things for sympathy - which I hate anyway. Empathy, yes; sympathy, no thank you. I'm telling you so that you can see that as bad as things are/seem to be at the moment they really are more or less normal for Behcet's. I don't want you to wind yourself up and make yourself even more anxious - who is that going to help?

    As Tiger said, please stop worrying about neurobehcet's. The fact is, a number of those medications you take could be responsible for your poor memory. Amytriptiline in particular is known to cause poor concentration, confusion, drowsiness AND memory loss. The chances are that this is your problem. Again as Tiger suggests - wait until you see a specialist and mention it to him then. In fact, I suggest you make a list of all the things that are bothering you so that you will remember to discuss them. Some people even send the list on in advance if they are seeing a new doctor.

    My own memory is bad too, I wrote about it a couple of weeks ago. I understand it is scary but you should try not to lay everything at the door of Behcet's and to look at other possible causes first.

    Your children love you and 11 and 13 is old enough to have some understanding that mummy is ill and certainly not loopy. My boys have been a tremendous support - sometimes they've been a complete pain and made me cry but most of the time it's the opposite.

    I don't know what else to say, Gisele. I feel for you but I would like you to take a step back and think about things carefully rather than in a panic. I used to hold writing therapy classes and I know that sometimes just to write things down helps. Nobody needs to read it, so don't worry about spelling and grammar and such like. Write about how you feel, most people find that after a few minutes the words pour out onto the paper. You would be amazed at what insight this gives you - we seem to have a wisdom inside us that free writing lets out.

    There, I've done. I will now go and lie down in a darkened room!

  • Hi there and thank you so much for taking the time to reply to my questions, your response has been a great comfort to me as just knowing someone understands is somewhat relieving. On a day to day basis, surrounded by people that have no clue about Behcets, it's very hard indeed to try to stay optimistic. I have just found this site and am so very grateful that I did because I am so tired of putting on a brave face and trying to kid myself that I'm fine. Thus such, generally keeping myself to myself and shying away from outings/hobbies/relationships has taken it's toll and as much as I don't want to admit it here I am asking for support via the internet. I know this probably all sounds very garbled but I'm at a lose to whom to turn to. I was once a very proud, independent woman and now I feel like a complete mess. I sincerely hope you can make sense of my reply as I am in a lot of pain and finding it considerably difficult to take a step back. Sorry to be such a depresso about it and I'm sorry to sound so self absorbed and selfish, I know there are lots of people worse off out there which is one of the things that keeps me going.

    Kind regards

    G

  • you should be in councilling xx

  • Hi sorry for such a late response, I would appreciate any kind of support be it councilling or in a group but unfortunately it seems around here, namely Grays in Essex I may as well say I am suffering from a disease from Mars because thats how a majority of doctors deal with it round here, as do ppl in general. My eyesight is failing me, I feel as though I'm losing my mind, memory and mobility and in the mean time I have to pretend everything is ok and I'm coping on my own with 2 teenage boys and to boot I have got the snotty secondary school breathing down my neck. Im very very unhappy and feeling as though reality is day by day slipping further and further away from me and having very scarey images of ending up in a straight jacket in a padded room....Im feel as though I'm becoming more and more detached from society and even my friends because no-body except you guys on here understand what this sodding illness is all about!!! I have had several thoughts of ending my life because I cannot cope like I make out. I have to knock myself out every night with sleeping tablets just to stay safe and away from my own mind and solitude. I seem to never be able to help people understand what is wrong with me on a daily basis and the kids are exploiting the fact Mum forgets loads of stuff. Food has become my friend and foe all wrapped in one, excuse the pun. My face looks like a pizza my skin looks lijke an old lady's and I bruise or swell just looking at a mozzie or tripping over the dog. I've fallen down the stairs on numerous occasions, burnt myself accidently trying to cook and now sleep on the floor downstairs to prevent further injury. I was referred to Barts hospital which I thought at the time was a good thing until the day I was to go....I stressed and stressed because as usual I would have to go on my own and this terrified me as I would have to walk to the train station which would have caused considerable pain and zapped all my energy....I knew once this happened I would feel disorrientATED and vunerable....prob wouldnt make the train journey or if I did I'd end up somewhere lost and looking liked a depraved nutter!! I have missed several appointments because of this very thing...which as you will imagine annoyes the hell out of NHS staff (understandably so) anyway I phoned up Barts in Whitechapel and explained I really didnt feel up to making the journey alone and could I possibly have a later appointment so my kids could escort me to which they said no. I then asked if my doctor had referred me to the right place and was it the centre of excellence for behcets and could I speak to someone who understands behcets to which she replied I had only been referred to the pain management team for my bACK ACHE and didnt know what I was talking about???? I am very very frustrated and confused coz i was under the impression that a centre of excellence for behcets would be a little more helpful than this!!!! This website is the only resource I can find for behcets and i have seen numerous docs most of which blink at me vaguely and go ahead and advise me to go on to several serious medications that I feel are playing with my life and mind willy nilly. I have realized in this time (approx 8/9 years that I am nothing more than an anomoly for which the medical profession enjoy testing various medications on. I know I am probably being what seems a little harsh however that is how I feel I haVE been treated over the years..... I have no supportive family friends or even medics whom I can turn to in a crisis so I feel WHAT IS THE POINT of keeping going round in circles trying to get someone to sit up and see what a wretched situation I find myself in with 2 boys....should I have a stroke or end up completely blind what happens then??? I feel I have diminished responsibility as a mother and am now doing more harm than good trying to cope. I don't drink or

    smoke and I don't go out for fun....surely something has got to give!!!! I'm not organised enough to keep a continuous record of everyday of the last eight years and not able to express it all everytime I sit in front of a new consultant which seems very often....its not only exhausting but tedious and ultimately embarrassing and futile. I would give my right arm to be in contact with ANYBODY who consistently understands the trials and tribulations of this disease I dont want sympathy just someone to reassure me I'll be ok...we'll be ok... I'm shattered now after that rant.....I guess just writing it all down is as good as its going to get. Thank you for reading and sorry for depressing the hell out of you all who are also suffering. I realize I'm definitely not the only one although on an everyday basis coping with ordinary everyday things it does feel like i'm in a bubble bouncing round and the bubble is getting bigger and bigger. I cant seem to trust a soul my kids or even myself anymore and once upon a time I was a brave spirited and energetic individual who never let the bastards get me down!!!! Where did she go.........

  • Giselle, under normal circumstances I would send you a private message but I can't do that at the moment because I'm using my strength to help myself - I'm in a situation not as bad as yours but not too far removed.

    Having said that, I am very concerned about you. You need to speak to a medic - and yes I know your recent experience isn't good - because you need help to get you over this bump in the road and moved on to smoother ground.

    Are there no GPs at the practice who you can talk to? If your answer is 'no' then I strongly suggest you move to another practice. When I've been desperate in the past I've just presented at A&E to short-circuit the system. If you told any medic worth his salt what you have just written here s/he would be duty bound to help you. Not to do so would be (in my opinion) medical negligence. What about if you printed off your cry for help - because that's what it is - and took it to the docs? I'm going to just write a list of the people who might be able to help, it's down to y ou what you do with this list, okay?

    Practice nurse

    GP

    A&E doctor

    Private psychologist/psychiatrist

    Does it offend you that I've written that last bit? If it has, well I'm sorry but I'm hearing somebody for whom it's all got too much. You have very real health problems and nobody is listening so you need to gather your strength to fight. You cannot fight whilst you are feeling so rotten - and this is why I think you need to see somebody about how you feel emotionally.

    I don't know the percentage but I'm sure there are loads of us on antidepressant meds - with such an illness it would be strange if we were not. And, if it helps, I'm on a high dose of antidepressants - Venlafaxine - because otherwise I just do not cope.

    I'm sorry not to engage and to reply in this impersonal way. I couldn't let this go with not saying something but I have learned what I can and cannot take on and at the moment my darling I would be more of a hindrance to you than a help.

    You can let off here as much as you want to/need to and we will llisten and support you but what we can't do is give you the one-to-one help you so desperately need xxxxx

  • no, you don't sound self-absorbed, you sound confused and in pain. I understand your confusion and I understand your pain but, even though I know exactly how you feel I can't help you, only you can do that.

    For the time being then just write to us here and take the time if you can concentrate to read as many posts as you can so you get the feel of how absolutely normal you are in 'our' terms!

    Your major task is to contact the Society's help line; you don't even have to talk to anybody, you can do it all via email. Write to them at info@behcetsdisease.org.uk. Remember that nobody is judging you and that the Society, in particular, is there to help and they're probably itching to do so.

    That email will be your first step to getting back in control of your life - and while you're waiting for your first appointment with a special specialist you can continue to talk to us here.

    xx

  • Hi Gisele

    I would probably echo everying that people have already said and the advice to contact the society's helpline will help you to take back some control.

    Just remember we are all here to support eachother through this and we all know how this can feel.

    Take care

    Andrea :)

  • Hi Gisele

    Again I am going to echo everything said above. Contact the society's helpline and get a list of specialists who are interested in Behcets.

    Also, we are all different. I have been through the mill and have had to change medications regularly, however how been told this is part of the disease.

    Instead of looking at yourself as guinea pig thing how special you are and that the specialists are trying to find the medication cocktail (that's what mine has been called) suitable for you.

    At least you are communicating with a group who understand what you are going through.

    Lesley

  • Hello Tigerfeet;

    Due to its specific multisystem involvement in Behçet's disease in dermatology, rheumatology, ophthalmology, neurology, many departments, particularly the diagnosis, treatment and follow-up processes must be included in, the lack of a uniform treatment of us, he does not pessimistic. We want you to be happy in us.

    To discuss;

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