I am sitting here well enough now to start researching BS more thoroughly, having spent a week accumulating the symptoms and my doctor suggesting I have it on Friday.
I am usually healthy and well but have had a couple of bouts of nasty ulcers in my mouth. A week ago I was having unusual stiffness in my lower legs and later in the morning when I lifted my trouser legs found a rash on both my ankles from my ankles up to my knees. It was sore to touch and hot. I was concerned so went onto NHS helpline who sent me to a walk in clinic. They took urine sample and suggested if not better by Tuesday to go back to my doctor.
By then I had head ache, temperature, the rash had spread up and onto my arms. My lower legs still very sore and felt bruised to the touch. I had spent most of Monday in bed sleeping. I was given a general antibiotic, bloods taken and another urine sample which was sore.
I went to bed for the next two days, expounding head just wanting to sleep and waited for the results to come back with something. To my disbelief they were both clear, with no further action.
I went back to another doctor on Friday, now with considerable soreness down below, thumping head ache, rash from ankles up, acne spots and other smaller pustules, mouth and tongue full of ulcers.
His first long shot was herpies. He knows us well and the idea of me having herpies was not that probable as neither I or my husband suffer from cold sores. Then he dug his big book out and came back with the other long shot of BS..... I have been on anti virul tabs for two days and today I do feel more myself and got out of my bed for the first time in a week, comfortable. However, ulcers though better are still there as with down below and rash/ skin lesions, sore swollen ankles are still very much the same but darker in colour.
It's been quite a roller coaster week...... I'm healthy, I don't get I'll often at all and yet suddenly I could have BS.....
I'm just so pleased this forum exists right now, that I'm not alone, and that there seems help at hand. It's too weird for words.....I hope someone will respond.
Written by
joham
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Hi to you and a very big welcome to our little family and well done for tracking us down.
I am not sure if you actually have a confirmed diagnosis of BD yet hun as it usually takes quite a few tests and observations from an expert in this field before you meet the qualifying criteria currently required by the international standard of symptoms required. This doesn't mean you don't have it either so don't panic hun.
First thing to do is to have a look around our site by typing in words that you find and relate to you (or just interest you at the moment) in the search box at the top of the screen on the right.
Please remember hun that all the things you read on here and other places does not mean you can expect to get ALL of them or ANY of them in particular, such is the nature of the beast and with the correct treatment, you may well go on to have a reasonably normal lifestyle. Some of us here have not been so lucky and we all pull together whatever stage we find ourselves at, from newly discovered or old hands on the subject to make our support network second to none as you may have realised if you have been reading sites relating to BD.
You must read all the information available to you on BSS website. (Behcets Syndrome Society) who run this site for us and are a wealth of information which is correct unlike a lot of spurious info you can find if you just surf the web and read everything you find. You will also scare yourself half to death unnecessarily to boot !
I don't know where you are based hun, but I am delighted to tell you that over the last couple of years we have been privileged to have three Centres of Excellence specifically for Behcets set up around the country. Each one has a range of experts at consultant level that you will need to see regularly all in one place which you can see all in one visit instead of many separate appointments which can take up so much of your time and effort, particularly if you are in a flare at the time. (Look up flare to understand how this might affect you ) basically it is when our symptoms go a bit bonkers and we need some extra help in controlling them. This is where you will be able to get a firm diagnosis of BD sometimes quicker than other routes and it is important to do so in order to ensure you receive the correct treatments available and control your symptoms. You will also feel so much better when the treatments are correct for you and are working to make your life better.
There are three C of E's, One based in London, One in Aintree, (Liverpool) and the last in Birmingham so they cover most areas in UK. Even if you can't travel to a centre they will still assist you by phone or email and your doctor too if he wants to speak to them. Please do your very best to get a referral to your nearest centre as they are the very best treatment options available to you and you will feel so safe and amongst friends in all of them. You will find the details about them all on the BSS web pages together with names and contact details for all the necessary people at each one.
Last but not least, you now have us. Tara !! we are a real friendly group who support each other through thick and thin and also enjoy a good laugh from time to time as well. Please feel very free to contribute at any stage and ask as many questions as you like. We never get fed up of answering people in distress or who just want to have a chat ( which we all do at some stage or other.) If there is something that is quite personal and you wish to only aim at the BD group, please remember to indicate this option when you write your question. You may also Private Message someone specifically and have a private conversation just with that person or a group of 3 or more just by adding their profiles at the 'message to ' box when you start. You will find that we are quite graphic at times with pictures and descriptions and no-one gets embarrassed by anything you want to talk about as we all get the same things.
I hope I have given you a pretty good overall run down on how things work here hun and you feel a little more at home now. As time goes by I am sure you will enjoy chatting with us all and learning a lot about the BD at the same time. So welcome hun..... you're now one of us okay ? mwah !
Welcome to the site, I am sure you will find some interesting stories and advice whatever your diagnosis will be. You haven't said how long you have been suffering although you do seem to have a good health network where you are, are you in the UK?
I have suffered from BD for 27 years and it took me over 12 years to get a diagnosis. Over time there have certainly been improvements with more information and better knowledge of immune diseases in particular large leaps with BD. currently from what I have heard and read the average diagnosis time line for BD is about 2 years. You must remember there are many diseases with similar and crossover symptoms and it is SO IMPORTANT to get the correct diagnosis with regards to the treatment, management and medications. My point being that you need to be seen by the right doctors, consultants and hospitals to be absolutely sure and I know this can take many months but it is better than a wrong diagnosis.
I do wish you the very best with this journey of immune diseases and myself and I know others will be here to support you through it all.
The best advice I can give at this time is .....be strong, ask questions, stick to your gut instincts and sometimes you have to push for answers and followups.
I agree with the above many many auto immune diseases that have similar symptoms. The rash on the legs sounds like erethema nodosum which i suffer from in a flare of this disease. I know what you mean when you say they are painful. I cant even bare a sheet on my legs when it happens. I had all the same symptoms and more but it still took 20 years to diagnose you properly. If your dr does think it is BD then get him to refer you to a behcets centre of excellence. There is one in London Liverpool and Birminngham if you want the correct diagnosis these places will give it. I wish you look with your research and dont be afraid to ask questions. Big hugs Christine
Thank you so much for your comments Tara, Billi and Christine. I will take on all your advice. Yes I am in the UK Billi. I don't have a formal diagnosis yet but have a lovely doctor who goes the extra mile and was fortunate to meet another lovely doctor on call last night who is familiar with BS and my symptoms tick all the boxes with her. I'm going back on Tuesday for more bloods for a platelet count so I begin the process of diagnosis.
Thank you for the information on centres of excellence, I will tell my doctor when I see him.
I can't tell you how reassuring it has been to meet you all. Thank you and look forward to speaking with you further at a later date.
Thank you so much for your comments Tara, Billi and Christine. I will take on all your advice. Yes I am in the UK Billi. I don't have a formal diagnosis yet but have a lovely doctor who goes the extra mile and was fortunate to meet another lovely doctor on call last night who is familiar with BS and my symptoms tick all the boxes with her. I'm going back on Tuesday for more bloods for a platelet count so I begin the process of diagnosis.
Thank you for the information on centres of excellence, I will tell my doctor when I see him.
I can't tell you how reassuring it has been to meet you all. Thank you and look forward to speaking with you further at a later date.
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