Is it really Behcets if you don't have ALL sym... - Behçet's UK

Behçet's UK
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Is it really Behcets if you don't have ALL symptoms?

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My 15 year old son has just been told he has behcets - he doesn't have the eye sores or anal sores - just terrible ulcers and leg sores. Does he have to have ALL symptoms for it to be this disease? We are all feeling pretty bleak at the moment :( Any advice would be great.

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Hello juslux;

You say that your son is suffering from Behçet. First of all I would like to wish to get past. The findings of which there are behcet son, please yazarmisin. 17-year-old student teacher at my school, oral thrush, and the body, there are signs of erythema nodosum, negative pathergy test application. Should go to the section of Dermatology, Faculty of Medicine explained. Then continue the course of the disease with different symptoms. After diagnosis, I need to do at that time

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Hidden in reply to Sunset

Thank you Sunset

Hello, my angel

Who made the diagnosis? If it was your GP then it might be a good idea to ask for a referral to one of the 3 new Centres of Excellence, which are staffed by professors and medics who have dedicated their careers to Behcet's Disease (BD). In fact, there is no reason not to ask for a referral no matter who made the diagnosis. Quite often it is made by rheumatologists, who tend to lead the care of most autoimmune diseases.

A direct answer to your question - yes, it can still be BD. Not everybody has all the symptoms. Recent research has shown that people have a constellation or cluster of symptoms, so if, for example you have ulceration then you are also likely to have acne and arthritis too. Not all the symptoms develop at the same time, which is why many of us took years to get a diagnosis.

I was diagnosed round about 2005 (I'm a little woolly on the exact year) on the basis of urethral ulcers, joint pain, and skin lesions. I have never had genital ulcers and I have never had problems with my eyes.

The diagnostic criteria has changed over recent years and the best place to read them all is in the BSS information sheet

behcets.org.uk/menus/main.a...

Being told some one you love is suffering from an incurable disease is devastating and it will take you time to digest this information. But incurable does not mean untreatable - the next step will be to try your son on a number of drugs in an effort to reduce or eliminate his symptoms.

Please keep writing to us, we are a friendly bunch and there is always somebody around with an answer - or a shoulder to cry on should that be what you need.

Love

Di

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Hidden in reply to devonshiredumpling

Thank you for replying

I agree with Di. There are a whole lot of things that come with Behcets, but you wont have all of them. I have had it all my life (52now) and haven't had a lot of things. I have not had problems with my eyes either, they do say that if it is going to affect your eyes, that this is an early symptom, so fingers crossed, he may not get the eye problems. It is a good idea to ask for a referral to one of the centres, as all the consultants are there at the same time and you see them all then they decide together what the course of treatment will be. Please be careful if you look things up on the internet as some of these sites can be very frightening. Keeping positive is also good, hard sometimes I know, and remember that with the right treatment your son will have a relatively normal life, it may not seem like that at the moment, but believe me there are lots of us who remain "normal", we just learn to pace ourselves and keep positive. There are also support groups in some places with more being set up soon, where abouts do you live? I may be able to put you in contact with one of them.

This forum is very friendly and informative and there is also the Behcets society themselves or their helpline that you can contact if you need to.

Take care, and hope your son gets on the right medication soon.

Lynn

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Hidden in reply to kenjay

Thank you - I have written a message below - am new to this kind of thing

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Thank you everyone for taking the time to reply. I have terrified myself on the internet almost to the point of panic! Feeling very teary about the whole thing but trying to keep up beat for Thom. I have four children, he is my second and none of the others have it. I just don't understand this at all. At the moment the Drs are saying that it is most likely Behcets - we live in Luxembourg (but we are English) and we have been to Austria (Dermatolgy dept) and Namur ENT/Stomatitis (Belgium) to university hospitals. Now they are talking about sending us to Hamburg for further immunology tests. I don't think they have seen it in Lux before to be honest. We are on cortisone and have local treatments and he is ok at the moment (TOUCH WOOD). I want him to live a normal teenage life! I daren't let him play rugby anymore. Have you heard about a change of diet being any help? He was dairy intolerant as a baby and he still isn't keen on these products, was wondering if I should try him on a dairy free diet.

Sorry for sounding so emotional - I just want to make him better and I can't.

Justine

devonshiredumpling
devonshiredumpling in reply to Hidden

Oh, Justine,of course you are emotional - there would be something wrong if you didn't! We want to protect our children and take the ills of the world off of them and suffer them ourselves if need be. On a much less scary note, my 25 year old son has just been dumped by his girlfriend of three years and has a broken heart - I feel all the emotions you do about your Thom (mine is a Tom too). We are programmed to nurture and protect - especially so when they are aged just 15.

There are a few mums of BD children on here and I suspect they will make themselves known to you; in the meantime, you just keep talking and we will keep listening.

Hugs

Di

Lara1
Lara1 in reply to Hidden

Hi Justine

I also live in Luxembourg and have a diagnosis of behcet's from my G.P. which an immunologist at Kirchberg hospital did not agree with. It would be very helpful to exchange some information about doctors / centers in the region. Please let me know if that's ok with you.

Lara

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I totally agree, you don't have to have all the symptoms to be diagnosed with BD. I think someone would be extremely unlucky to get all the symptoms. Having a few of them is bad enough.

I am intolerant to dairy now, but was fine with dairy till about 5-6 years ago, which was when I first started getting severe mouth ulcers and gastro problems.

Being diagnosed with BD last year, after being round the houses at the hospital and misdiagnosed for many years set all number of emotions running round my head. Part of me was relieved that I finally had a name to what was making me so sick. As BD isn't very common I found it hard not knowing what the future had in store for me. Finding this site has helped me understand more about BD and what treatments there are out there. I wouldn't wish my worst enemy to have BD, but being able to communicate with other people with the same condition has been a invaluable. C x x

Hi Justine Hun,

The first thing I want to do is just cuddle you up in my arms and have a good cry together and get this initial panic and desperation out of your system.

Now Hun, lets get down to the nitty gritty ! Di has given you some very well founded and excellent advice on where to find the right info and not all this rubbish that has flooded the internet which is enough to scare the pants off a vicar. Task one ........ get the facts right from the very beginning. Only use reliable sources for your info and bear in mind that different country's have different views on how the whole BD should be treated and get to know what is available for your son where you are. Sit down with all the info you find on the BSS pages, print it off and discuss it with your medical advisors. They may well be shooting in the dark on the subject and there is a lot of information on there that you can give them which will help them understand what they are dealing with and between you all you can form a plan on how you are going to approach his symptoms and very importantly, how HE feels about the treatment and how it will affect him.

I know you are a mum and rightfully feel the need to protect him from all things ghastly out in the big wide world but he is a young man and at 15 should be able to make decisions for himself together with your guidance about how he wants to live his life and cope with what is a very confusing and very varied life long medical condition. It will not be long before he will be considering a life outside of the family household and this should not prevent him from doing anything normal boys of his age do providing he feels well enough on that particular day to do it. It is a lifelong condition that cannot be cured but it can be treated very successfully and many people live with BD and have a fairly normal way of life.

What you have to get into your head is that all these things you have read about are possibilities of what can happen when someone develops BD. The big emphasis is on MIGHT here and there are no guarantees that he WILL develop any of them during his lifetime. You must allow him to live a normal teenagers life if he is well enough to do that as later in his lifetime (as often happens) the different parts of BD MAY start to appear a little more, often between ages 40 - 50 is the norm although as you are well aware, it can develop at a much younger age or not develop any further at all.

Please try to remember my love, that Thom is Thom. Not a BD case waiting to happen. He is a very normal young man and not the disease that is afflicting him at the moment. He should be encouraged to do all things young men do and listen to his own body which will tell him how much he is likely to manage that particular day and decide to prioritise his own life and BD control regime as he learns more about how it will affect him as an individual which may be very different from your current expectations of what you see his life beginning to look like. The main thing he will face which affects all of us is the totally fatigue that just comes with the whole deal. He will decide when to stop or take a day out under his duvet and snooze the day away and this is perfectly normal.

Just recently there was a brilliant topic discussed on here called the SPOON theory and I recommend very highly that you look this up (type in 'spoons' in the search button at the top right of the screen) and this will give you a very clear and concise understanding of how he will be able to manage his symptoms on a daily basis and how it MAY affect his lifestyle.

Please try to just take a step back hun and know that you are now amongst friends who will help you through the whole process and there are people on here who have children younger and around the same age As Thom who I am sure, will make themselves known to you as you keep interacting with our little family on here.

I know it is hard to believe at the moment hun, but it really IS going to be okay ! You and Thom will manage this with the help of your medical teams, your delightful family and friends and all the time we will be here in the background to answer any questions you may have or lend a shoulder to cry on if that's what you need. Okay ? Mwah !

Tootles xx :)

Hi Justine,

I'm a mum of a 10 year old daughter living with BD. You sound just like I did at the start. You have very natural & worrying mum thoughts. The number one thing is find a fantastic specialist who knows & understands BD.

You are so lucky to already be learning from the above experts. I know I hang on there every word, although they don't know it. I thank them for my better understanding of this horrid condition.

The first BD flare scared me to death & when the specialists began using diseases or symptoms I had never heard off, I promised myself not to take notice of crap sights. When symptoms presented themselves, only then did I look at the American BD sight. I will admit it scared me too.

I hope you find the time to gather useful information that applies to your son, maybe showing his Dr may help them understand? If you have any questions, the people here are beautiful & where possible will offer advice or just a massive amount of love.

Michelle xx

I was diagnosed at the age of 7 based on joint pain, fatigue, oral and genital ulcers. I had extensive bloodwork that showed that I had the HLA-B51 antigen in my blood. Studies have shown that people w/Behcet's often (but not always) have this serotype. My father was Greek and this disease is more common amoung people who are mediterranean. Does your son by any chance have any middle-eastern or mediterranean blood in his heritage? Good luck to you and your son.

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