How do i know if i've got Behcets?

Hey! So i know this is a vague question, but i'm really thinking I could have it. Since I was young (approx 7 or 8) i have had CONSTANT mouth ulcers...it started with 1 every couple of months and over the last few years its like at least one a week, sometimes over 4 or 5 at the same time! It's sooo painful!! I also get really bad spells of sores on my head, lasting about a month at a time every 3 or four months. I have constant backache, and I feel generally very weak. Sometimes I wake up with really bad muscular pains (not always, occassionally) but i feel always really off balance-i often trip over, sometimes over my own feet for no reason. I struggle to carry anything heavy or to walk uphills because it really hurts my neck, back and legs. I suffer from a joint problem with my jaw called temporamandibular joint disorder. I also have been to the doctors many times in the last few years with suspected bladder infections and IBS, but tests always come back negative! I am constantly tired, sometimes i physically can't stay awake and fall asleep when i have had a very good night sleep. I have a CONSTANT headache which usually lasts a month or so, then goes away for a while (approx 1 or 2 months) then comes back again. Occasionally, i get little blood-filled blisters around my upper genital area and groin, which are not really very painful but have left scars. I also get a bad throbbing pain in my lower right abdomen. I know there is something wrong but I don't seem to know what! I know you are not doctors, I was just wondering if anyone experienced similar problems and whether I should push to see a specialist about this....I'm very worried :(

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  • P.S i also have very watery eyes every day...As soon as I get into the open air my eyes water like hell....Lasting about a month at a time, I have spells where my eyes are really red and itchy :(

  • Hi Hun,

    First of all keep a diary and log all your symptoms down for a reasonable period.

    Take this to your GP and discuss with them why you think you may have BD and get them to go through the whole range of other chronic illnesses there are that have very similar symptoms. Your GP will probably do some preliminary tests here to eliminate any of the wide range of these from the list that he can.

    Finally, if your GP agrees there is a possibility you may have BD and has not found any other disease or syndrome that fits from his tests, get him to refer you to one of the New Centres of Excellence for Behcets based in either Liverpool, London or Birmingham where a team of experts will take it from there and decide if your theory is actually correct.

    You can find details of the centres on the BSS help pages.

    Hope that helps you Hun.

    big hugs xx

  • Something led you to think you may have BD and you have found us here, so you probably have a pretty good idea of what it's all about. Therefore you may know this already, but to add to Andrea's advice, this a post copied from a similar thread which you may find useful:

    "UKADMIN Behcets UK

    19 Apr 2012

    The diagnostic criteria are contained in the fact sheets on the Behcets Society website and the only way to get a definitive diagnosis is to see a Behcets specialist, contact the Society at info@behcetsdisease.org.uk for a list of UK consultants."

    To which I would add Andrea's advice about the Centre of Excellence.

  • Hey Guys!

    Thanks for your replies, it really helped! Been to the doctor today, unsurprisingly he wasn't very helpful, gave me iron tablets even though the blood test came back negative for iron deficiency or anaemia! I have a referral to a dentist in the maxillo facial clinic. Not really sure a dentist is goin to look at the bigger picture tbh :( Also realized today that i could potentially have had bouts of folicitus....always have spots with whiteheads on them on my legs and down below and get a lot of head sores...now im worried :( Dammmnnnn

    Thankyou for you replies though! <3

  • Snap! I have had mouth ulcers since I was 3 sometimes as many as 20 and the size of a 5 p! I have a watery eye everyday and I often get lower tight abdominal pain muscular aches and lots of headaches! I was diagnosed last year!! You are not alone xxxxxxx

  • Omg Stormie you sound just like me! Did u get referred to a specialist because the doctor thought u had it or because you suggested it? I really want to suggest it to the doctor but i get the impression they think i'm wasting their time, they just keep telling me to go home and take painkillers! Even my parents think im overexaggerating or being a hypochondriac! I keep feeling painful throbbings in my upper arm, a bit like what i get in my abdomen! The doctor said I couldn't possibly have behcets as my ulcers tend to come and go within 2-3 weeks and if it was behcets it would definitely last longer that 3 weeks. This could be true but i feel they either dont know enough about it (not that i do either, i'm just pointing out) or they are just fobbing me off....ahhh i dunno :( Proper stressing me and worrying me big time! Thankyou for your reply!XXX

  • Nicz,

    Long story.... Since I wa 3 I have had the ulcers!

    At the age of about 8 I was referred to the dental hospital. The would look at me, count them and send me away with another lotion to put on them. When I was 15 they told me 'off the record' that if I smoked I would not get ulcers...how true! When I smoke I dont get any!!! I get all the others though, aches, IBS, headaches, joint pain blah blah blah. For years I would go to my GP (different ones) and ask for help, only to be sent away with more meds that did NOTHING!

    I tried an alergy specialist, diets blah blah blah... acupunctre helped LOADS! Stopped the worst of the ulcers and other symptoms! My lady was amazing but even she said that it would be impossible to see me every week for the rest of my life.

    I had never heard of BD but I went to a different GP last year (30 years later) and he referred me to a rheumatologist who suggested it as soon as he saw me.

    This week I had a letter with the news that I have tested positive for HLA B5 which is an indicator along with my symptoms. I have cried lots because part of me KNEW there was something wrong but part of me is gutted that there is something wrong! My ulcers last 3 weeks each but they come all the time so i rarely get a break from them...always here to offer support

    xxxx

  • Can anyone help me I am unsure where to get Help ASAP. My brother who is 31 started with mouth ulcers about five months ago. He went to a Dentist who said it was gingivitis. Then he started with a rash on most of the body. Swollen face and eyes. It's got that bad now that he is losing faith in the medical profession. He has started on anti viral tablets as a GP thought it was herpes simplex1. Now he has postulating ulcers on his genitals and struggles to walk or go to the toilet. We attended A@E and waited three hours to be given Co-Dydramol. He thought he wood go to the GUM clinic to rule out any sexual diseases but was told they don't do treatments at there clinic. He has had no swabs taken not even a blood test????? What shall we do now? Is there any consultant who we could go to privately? Xx

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