I know the information at the Society is excellent - when I was first diagnosed I don't know what I would have done without them. But this community has been such an eye opener for me (as I keep saying, sorry) mostly because I've discovered that some of the health problems I have, that I was told were nothing to do with Behcet's, are actually very common in BD!
If there was some medically moderated list available containing all the known Behcet's conditions and not just the usual triad, surely that would be reassuring to those of us who sometimes struggle with duff information out in the community.
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devonshiredumpling
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I think this is a great question. I just spent 10 days in the neurology ward of the southern general and no test could answer why my peripheral vision was gone and my memory, balance and eyesight were all deteriorating. I did call the behcets info line and then left messages with some of the medical clinicians on the list but none where available. I am now home with all the problems still there, desperately trying to get an appointment with my rheumatologist. Is this illness just like a gene modifying or mutating to cause these new problems. I think your question would help us a lot. I feel totally alone just now and noone can help. Being in Scotland no one really knows this disease.
I'm glad you feel the same way - if you see what I mean. I'm a fairly strong minded woman and I understand how the health service runs because I was a hospital midwife and then a labour ward manager for quite a few years.
So, I'm lucky; doctors at whatever level don't intimidate me and I understand most of what I'm told. The stuff I can't instantly understand I can work out by looking at word roots.
So, if I am that rather fortunate position yet it still all manages to confuse me, worry me, anger me and, sometimes, absolutely terrify me, what does it feel like for others? I would hazard a guess that it's bloody awful.
I'm not sure who to approach about this - this is not about me going off at a tangent or being a loose cannon! I just think its time that the Behcet's community got its bum into gear. Bloody hell, there are so few of us we could probably hold a party in my tiny kitchen! Well that might be overstating it but you know what I mean. Having said that, I feel so strongly about it all that I would even volunteer if I knew who to speak to.
I'll get in touch with the society after the holiday (unless they want to respond here of course ;-))
Hi Di I do love it when you sound off...it makes so much sense and I know what you mean and feel. That's what is so great about this forum, not that I like other people experiencing what I am as that has never reasurred me really. But It's kind of like having an extended family....ahhhhhh.
Jazzy I think about you a lot because what you are going through I have been there and am still suffering with it.
I have come to the conclusion that unless I have a massive stick stuck in my eye and one leg obviously much longer than the other throwing me off balance, the doctors are not going to find a solution. It makes me very concerned/upset/angry that the doctors will not treat what they cannot see or test.
Basicly I am having to learn how to accomodate each new symptom as it comes along, whether it is connected to behcets or not.
Talking of symptoms I have a brilliant book [there aren't many] called "Essential Guide to Behcet's Disease" which has been compiled from personal experience and using Doctors reference reports. A woman called Joanne Zeis wrote it forewarded by an american Doctor C.Stephen Foster M.D F.A.C.S.
It is such and informative book and it is interesting how many of the symptoms we talk about her, are contained with the book and doctors that have written reports about behcets, have experienced these symptoms in their patients.
It is quite hard to get hold I had one years ago from America but lost it [not sure how] but I got a new one from Amazon and was lucky that someone was selling it off.
if you get a chance to buy one, jump at it because it is a really good book and has helped me out with doctors in the past who profess to know about behcets and yet say "you don't get that with Behcets".
I'm the same - I love reading these posts. I've started making mine visible only to the community because I'm not sure who's reading them. I've been handing out the name of the website gaily!
Lesley
There cannot be a definitive list for an ongoing condition, particularly when there is such a big crossover of symptoms with other conditions. This could do more harm than good if it means there is a risk of mis-diagnosis or missing some other cause or condtion. Although patients have symptoms in common that are not yet recognised or accepted by docs, until or unless they can be researched and proven, or docs have had enough experience of them to be confident, they are not going to officially list them. This would not be fair to doctors or patients.
There are Doctors all over the world researching and working hard to find out as much as they can about this disease and there are many published papers. Research is limited by several factors, one being funds, another being the widespread location of patients and doctors. There are conferences, meetings, sharing of information and much hard work goes on. A doc I know has undertaken his own research in his own time at probably at his own expense, because he is so dedicated to finding out more. I know of a family who offered themselves up for research because two of them were diagnosed with BD and 6 of them had immune system type disorders. The docs were frustrated and disappointed that they couldn't take up the offer because of funding and time.
However, you cannot make a doc specifically interested in a particular condition or expect him/her to know everything about it. If every Rheumo for instance, or Dermo or Immuno, was knowledgeable about every condition that comes under their remit, they would have to have studied for a gazillion years. Nor can we expect them to research in their own time or at their own expense - if funds and manpower are not available, knowledge is difficult to share.
What we can do is be guided by advice from the Society (those of you who have contacted them and not yet got a response please be patient, they are volunteers and some of them have BD so it does sometimes take a while to get a response) and by the advice of those docs who do know about BD - those who specialise, have a special interest and who have experience and those who are willing to learn. Allowing nursing staff and students to be present at our appointments will help to spread awareness, interest and knowledge. We can also take literature from the Society and ask receptionists at the clinics we attend if they can be put on display with their other information sheets/leaflets.
Unfortunately, there are some docs who are unable to accept or admit that they do not know enough, or anything, about our condition and are not prepared to help, or conclude that there is nothing wrong/we are making it up etc etc. A lot of people have been down that road and sadly there will probably be many more. If you have a doc like that, you can ask for a second opinion and get recommendation about who to see next from the Society or fellow BD patients who have good docs. Those who have good docs could help by checking if they are on the Society's recommended list and letting the Society know if they are not.
Regarding a comprehensive list of symptoms, there are many groups, facebook pages etc who list and share their symptoms and you may find this of help. The movement of BD patients worldwide is influential, many docs are members of BD groups and learn from them as well as contribute to them. A word of caution - there is no doubt that BD patients have symptoms in common that are not listed or medically recognised. If they have not been officially studied, proven and recognised by medics, then they are unlikely to appear on a 'checklist' of symptoms. e.g. Two BD patients may have hot flushes but that doesn't automatically make it a symptom of BD or mean that the cause is the same for each patient. It could be menopause, medication, a virus and of course it could also be a symptom of BD, but there is a risk of assuming it is BD and nothing else, and then missing a possible other cause. I know someone with BD, cancer, diabetes, thyroid problems, sjogrens syndrome and arthritis. BD can cause arthritic type symptoms, it can cause dryness of mucus membranes like sjogrens - which is it? How does a doc decide? Likewise, on a forum or within a support group, it is extremely helpful to share experiences and symptoms, but it doesn't mean that people sharing the same symptoms necessarily have them for the same reason. This is something docs are faced with when making the difficult decision about diagnosis and treatment.
Whilst there are unhelpful and unwilling to learn docs out there, there are also those who are doing as much as they can, but BD isn't a straightforward condition, there is still a lot to learn about it, so if we can be proactive and supportive of the medical profession and assertive with those who are really not much help we can help to move things forward.
If a doc tells you a particular symptom or experience is not BD, find out why he thinks that, what he thinks it is, and what he is going to do about it - if it is beyond his knowledge then he should admit that and refer you to someone else, or make an effort to find out. Aggression won't help but assertiveness will. If a doc says 'you don't get that with behcets' you can point out factually that you know someone who has, but also ask - then what is it? Where do we go from here? After all, you are there to be treated for your symptoms, whatever name they are given.
Thank you for this reply. I have recommended this book quite a few times. It answers a lot of questions for a Behcets sufferer. Don't be put off by it being written by an American author, the information is the same.
The helpline volunteers are all sufferers or careers of sufferers with Behcets, so if you call and you get an answer phone, please don't just hang up, leave a message and you will get a call back. thank you.
Thanks Tiger for a wonderful response - measured and sensible, two things I cannot be accused of being! I do go off on one occasionally and, quite often, the result is to move things on or get things done. At other times the response goes along the line of 'hey, hold your horses, have you thought about x, y, and z?'
I think there is ample room for both types in the world!
I am one of those pain-in-the-bum people (according to my OH anyway) who can never accept but constantly has to question. Can you then imagine what having this disease does to my poor head? How many why's, buts and what if's go though my brain on a daily basis? Well, it keeps me occupied at least.
I'm pleased that my comments generated such discussion - yes, we are here to support and help, to hug and to comfort but there are times when we could ask the big questions too.
Now, today is a BBBD - a bloody bad Behcet's day. I'm tired and I hurt and there is so much I wanted to get done Pah! I'll be around though and watching and listening cos, basically, I always am. Like Andrea said, I think of you as family x
Ha ha Ms Devonshire (it's too much to type the whole name so if it's ok I'll abbreviate it from now) - I am not so different - It's easier to take a back seat and give measured advice when it's not me who is asking the question! Many many (more than I care to remember) years of experience have got me to where I am now and I got a lot of things wrong on the way, as well as learning what works for me.
I have worried about this and that symptom, been scared, fed up, thought I knew all the answers, thought I wasn't being taken seriously (and in some cases I wasn't) whinged, complained, been aggressive - It alienated docs, got me a reputation that didn't help and caused more fear and worry (prob for me AND the docs) than it was worth.
I'm now at the assertive, open minded and pro-active stage and I find that most docs respect me for it. I've gone from being a pain in the A to a 'fiercely determined and independent' person, as confirmed by my docs - it's written on my notes.
I believe that we not only need to keep ourselves informed, but to inform those who need to know - the person who knows best about how your symptoms affect you is you and the person who should know best about what could be done to help is your doc.
I aim for a coming together and negotiation and discussion between us and if I am not happy and have politely questioned and suggested but feel I have got nowhere, I say so, politely. I also say that I would like to consider the situation further and will get back to you (the doc) when I have read your clinic letter and discussed it with my GP/thought about it some more or whatever it is I want to do - you can't always get things sorted in one appointment, you don't always remember what was said and you often think of something you wish you had said. Sometimes the doc needs time to consider things too. It gives you some breathing (and calming down) space and the option to ask for a further appointment to discuss matters arising from the last one, rather than get steamed up at the time and potentially damaging a relationship that needs to have respect and trust on both sides. n.b. I always take a dictaphone and often find that things weren't said in the way I took them and things were said that I missed altogether.
I'm not saying I've got it right, it's just what works for me. I still worry sometimes, I still get annoyed at docs sometimes, I get fed up and frustrated, but I am in a better place regarding how to deal with it, a way that suits me and helps me make the best of things.
Hi Tigerfeet, I am so relieved to read your posts here....I can relate to you so completely it's almost as though I could have written what you have written myself. I used to be so good with words and expressing myself but seem to have lost that ability over time...
Thank you Gisele.
Many of us mourn what we can no longer do, but sometimes it leads us to new things we CAN do, or we find a different way of doing what we did before. It may take you more time to express yourself and to find those words, you may need to do things in a different way, use different words. You may not achieve the same level (but there again, you might!) but any achievement is a positive and the desire to do things is a great driver.
Some days I can't express my desire for a cup of tea or turn my pc on, never mind read or respond to any posts. When I feel I am able, or want to respond, it sometimes takes me all day (on and off) to put the post together.
We do what we can, when we can, and I expect nothing more from myself or anyone else with BD.
It is so heartening to read all your experiences, symptoms, thoughts and feelings about BD. I have felt very alone for the 10 or so years since I was diagnosed - in part from not knowing anyone else who has it, in part from not having a relationship with a particular consultant, and also - strangely enough- from feeling that my symptoms are not 'bad enough' to make me properly a part of the Behcet's community.
And yet of course I have struggled to cope with my own symptoms, even if they seem relatively mild compared to others, and know that BD has stolen away so much of who I formerly was.
As far as the recognised symptoms go - many of my health problems have been so odd and fluctuating, and certainly not on any formal list, that I have felt it just wasn't worth the effort to relate them to a consultant (who more often than not does not know too much about Behcets anyway) or even my GP. I have had no idea whether they were related to BD or not - and yet, reading other people's experiences here makes me realise that many of them obviously are.
The planned consultant appointments usually seem to coincide with a benign phase - and I find it difficult to talk to the doctor about things that sound vague or trivial, especially when everyone else at the rheumatology clinic looks in such a bad way! On my worst days I retreat from everything, on my good days I don't want to focus on the illness and just want to enjoy the wonderful respite of feeling human again.
But now I think I'm going to do things differently: at my next clinic appointment I'm going to be as honest as I can and actually tell them the truth of what MY Behcet's Disease is really like to live with :-))
You have just expressed my thoughts and feelings far more clearly and concisely than I have been able to thus far - and that includes the feeling that I wasn't seriously ill enough too! And, like you, my next consultant's appointment will be a far more honest and, just perhaps, demanding meeting than usual.
Di
xx
May I suggest not comparing yourselves to anyone else? By that I mean, don't think your symptoms are mild or trivial compared to others. If they are important to you then they are important, regardless of how anyone else feels or thinks. I've posted some suggestions on getting the best from you docs elsewhere that might help.
I think it's important to remember that we are all on the same side, even though it doesn't feel like it sometimes. Docs can be just as frustrated as us when they see or hear about something they don't recognise. A positive and assertive approach often works well and if you can be open minded, concise, informative and factual they usually take it seriously - respect on both sides works wonders. If they don't take it seriously, or you are not happy with their opinion or response, you can still be positive,(even if you feel like screaming) politely smile and say so. Then ask what they can do about it. because a symptom is a symptom so if they don't recognise it or accept it, then as professionals they should find out more or explain why. It may be nothing to do with BD, in which case they can let your GP know so he can take it further, or consult with colleagues for your next appointment, or suggest someone who they think is better suited to that particular symptom or health issue. This they may not be able to do straight away. They genuinely may not know what to do at that appointment. They are learning too. Remember, it's not a battlefield, it's a consultation from which both parties should be aiming for the best outcome.
I was just thinking about comparing ourselves. Actually, it's just occurred to me that I trivialised my symptoms far more before joining the forum. I had nothing to measure against - not in a comparative way but to try to work out what was the BD version of normal.
Since being part of this community I am far more aware that, actually, I am a poorly girl (okay, old woman). Before I tended to play it down and try not to make too much of an imposition on anybody or any service -perhaps because of the invisibility thing, I don't know.
I think what I'm saying is that being part of this group has been very empowering for me.
Ah - learning partnerships! I have exactly that with my GP; we learn together. What I have been guilty of is playing down my symptoms with the consultants - there are such a lot of them that I've found it embarrassing. I don't for one moment blame them - if I don't tell, they can't help.
Although, my previous specialist did insist that headaches played no part in Behcet's and all I was experiencing was my normal migraines. I knew I wasn't because they were so different - just as severe but different. That is when I tend to get a bit tetchy. I am rarely aggressive though, it takes a lot to make me that - I'm a child of the fifties who was seen and not heard!
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Pah! I'll be around though and watching and listening cos, basically, I always am. Like Andrea said, I think of you as family x
Tongue Ulcers? 
Is it worth going to see a rheumatologist? Help needed :-)
PLEASE HELP
