How long ago were you diagnosed with Behcet's Syndrome?

635 voters
Lessthan a…1-2years…2-3years…3-4years…4-5years…5-6 ye…6+ yea…35.9%34.6%
AnswerVotes
Less than a year ago228
1-2 years ago78
2-3 years ago35
3-4 years ago32
4-5 years ago21
5-6 years ago21
6+ years ago220
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20 years ago

maw

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my husband has had behcets for around 33 years now and its got worse as he has got older

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25 years for me and things seem to have got worse in last 5 years

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my husband was dignosed with behcets in 1980 as he had a nasty flare and was taken into hosp he thinks that he has always had it as he had ulcers and joint pains as a child.

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Likewise! I first saw a doctor about pains in my knees when I was around 7 years old! They told my mum it was growing pains. Seems I'm still growing at 58 years old!

And as for the ulcers, my mum used to make me up a horrid tasting mixture to place on them because I used to have loads and loads of the blooming things! Her home-made remedy was borax and honey, which was kept in a little brown glass jar. If I think about it I can actually smell the stuff! Eugh!!!

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I had pains in my legs and headaches as a child and they told my parents I was having growing pains. As a child, I thought that was a cop out for not knowing what it was. Well, it was way, way back then.

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A couple of months ago :(

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Two years however probably had it for about 15 years

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il y a 2 ans après une errance de diagnostic d'environ 6 ans

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five years now and things are not going well

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13 year ago still struggling with the symptoms :(

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Five or six years, although I'm convinced I've had it since childhood. My mother took me to see the GP about my joint pains when I was around 8 years old and I clearly remember some nasty tasting treatment for my mouth ulcers - Borax and honey I think it was.

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11years now,but i all ways had mouth ulcers has a kid .

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12 years ago but have had it much longer

Hi healthyjohn...can we have some more polls as I do find them interesting. Maybe one on gender or another on symptoms would be good

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Great idea :)

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Diagnosed 15 years ago, though think I have had it much longer.

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My daughter was diagnosed about 3 years ago, her symptoms started when she was 17, she is now 25, although she has always suffered mouth ulcers and her 4 year old daughter suffers mouth ulcers too so not sure if she will end up suffering as well.

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I was diagnosed 3 years ago but have always had joint pain but ulcers only started about 5 years ago. Was told at 13 years of age that I had Rheumatoid Arthritis despite not remembering any tests being done!

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Erm, am I being a dunce (probably) here? I can't see how to vote in the poll.

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Been diagnosed about 2 years. Probably had it more like 25. Least now I know am not going crazy.

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After about 4 years of going round in circles at the hospital and at one point being diagnosed with Crohn's, when a colonoscopy found ulcers in my illium, then the diagnosis was withdrawn, I was finally diagnosed with BD in June this year.

Finally getting a diagnosis was all down to my G.P persisting with the idea that she thought I had BD after she saw the state of my mouth when it was full of pussy, weeping ulcers.

I have had mouth ulcers and joint pain for years although things have got much worse over the last 4 years.

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Hello cg74, I had the same as you. They diagnosed me with Crohn's, but now withdrawn forgood. But I don't know where to get a diagnosis.... What kind of docter diagnosed you with BD?

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Hi Iieke-z,

My G.P first put the pieces of the puzzle together, when I kept getting different symptoms. Gut problems obviously!! Mouth ulcers, vaginal ulcers, migraines, joint pain and stiffness, and extreme exhaustion. I was then referred to a Rheumatologist because they have a bit of understanding in BD. Hope this helps. C x x

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Hi Hidden. Ironically we sound almost like twins! After 20 years of Crohn's diagnosis and becoming more ill from side effects of medications for treatment I've finally gotten the correct diagnosis of BD-yeah, I feel extremely hopeful! May I ask are you are also being treated in the U.S.? Additionally, I'm trying to determine if my german and/or irish heritage is common among others with BD. Please share if you are comfortable in doing so. Be well! you're in my thoughts and prayers.

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Rheumatologist know loads about Behcets.

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My daughter was diagnosed exactly the same, only after a scan a couple of weeks ago, just before she was being taken into theatre to have her bowel removed did they realise it wasn’t her bowel at all but the Betchets attacking her bowel wall. She starts Pred transfusions tomorrow and then the big stuff is being bought out.

We’re very grateful to have found a new Rhemo at Coventry University hospital, he seems brilliant.

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about 2 years ago i think. After a process of elimination, the doctors narrowed it down to Bencets, which made perfect sense.

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I was diagnosed about 12 years ago but have had various complaints most of my life. I AM 58 YEARS YOUNG and this BD has got worse as time goes on. wish this bloody syndrome would go away. Sorry about swearing.

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This year.

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diagnosed about 20 years ago although going through medical records consultants have said i have probably had it since i was about 9 yrs which is 41yrs. OMG!!! i feel really old now i've written that down. ha ha

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Officially diagnosed just over 10 years ago but have had strange symptoms and illnesses all my life where all tests showed nothing. I was told in my early twenties that it was all in my head and I was seeking attention. I cried when I was officially diagnosed and felt totally vindicated. Thanks Prof Moots.

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Diagnosed about 12 years ago but had it since I was about 8 - 41 years. Just spent my teens and twenties being made to feel like a hypochondriac! Eternally grateful to the GP that finally joined all my symptons up and got a proper diagnosis.

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About 8 years but also having had symptoms from being a toddler, so 30 years really, my medical records show that my doc thought my mother was pretty much insane as she was constantly taking me in with symptoms. Tonsillitis/pharyngitis diagnosed several times a year, German measles diagnosed 13 times (even though you should only get it once, and the rash looks mysteriously like a Behcet's rash, stupid old git gave me the mmr jab 6 times so I can vouch that it doesn't cause all the problems they say it does). Even went blind as an 8 year old for about 20 mins and they insisted I must have banged my head even though I told them I hadn't. Thank heavens that old docs have to retire and get replaced eventually. My symptoms have calmed massively since I know what I have as I'm not so stressed about it.

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I had german measles diagnosed 7 or 8 times as a child...never thought about it as linked to Behcet's! I'm sure you are right and this was what was going on the whole time.

Was also diagnosed with a metal allergy about 11 years ago that was supposedly in the water supply where I lived at the time. Kept coming out in a rash on my face and chest and was told not to have baths or drink the water. Spent a fortune on bottled water. For the first time has struck me it could have been a Behcet's rash (didn't think I suffered badly from Behcet's skin problems).

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Diagnosed in 2000 following vaginal ulcers in 1999 which the doctors initially thought was herpes. I was told my symptoms are mild but as I could not get out of bed, was always tired and often had fever and shivering fly like symptoms it did not feel mild! have had symptoms however for over 30 years. I am now 50.I lead a very active work and social life due to my medication. I have not had a flare up of ulcers for 10 years. Recenty I began to itch everywhere but it now seems to have stopped. I worry about the future.I worry that my kids may get it.

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Diagnosed 7 or 8 years ago, but had serious symptoms for coming up 14 years now. I think I must have had it as a child too as was always 'sickly' with one thing or another and had constant mouth ulcers.

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25+ years ago

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A week and a half ago! Thought I had bad flu or glandular fever; then the ulcers came up and fortunately, at my insistence that it could not be herpes; my GP and practice nurse looked at each other and said 'Behcet's.....?' I'd never heard of it!! ... My bloods came back WBC 36.4.. GP came to my house and told me I needed to go to hospital; spent a week there due to severe ulceration. Currently on steroids and awaiting an appointment with Prof Moots. Speaking to my brother tonight, he tells me he has outbreaks of severe mouth ulcers, skin ulcers which won't heal, and he has had a DVT in the past; I've told him to see his GP.....

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34 years since 8

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My daughter was diagnosed over one year ago but started as a 5 year old with TN. Ulcers in mouth and joint pain at 6 years old. At 7 had a massive flare involving full body followed by ulcers on arms, legs, vagina, and sinus. Uveitis and increased pressure in left eye started at 11yrs.

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Hi all,

Diagnosed 1973; dissipated in the 90s, but come back again recently.

Moved to Ireland in 2001 -nobodyhad heard of it. At present,it has becme a bit more well kown, but treatment can be a bit prehistoric!

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I was dx about 7-8yrs ago. However iv suffered for 14yrs. It was my last pregnancy tht bought my first flare up. Dr's dx me wth post natal depression at first, list just grew to Herpes STD's... Eventually, i was dx by my Neurologist !!!!

Glad I had my bbies by thn. It would b impossible now !!!

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diagnosed 6mths ago sick for 8 years with all sorts of vague symptoms and it was a long road but at least now i know what bechets is and with the help of this forum getting to grips with it good luck and good health to all on here keep fighting the good fight and never give up

regards!!!

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First symptom, recurrent oral ulcers, was 27 years ago. Genital ulcers showed up 26 years ago, and I was given a diagnosis of "possible Behcet's" 25 years ago. More symptoms continued to develop over the years and I've been confirmed with "complete Behcet's Disease," e.g. we're 100% sure this is what you have.

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i was diagnosed 13 years ago. aged 19

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I was diagnosed 10 years ago. Am now 30

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I'm only 21 but I got diagnosed 8 years ago at just 13 :(

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Diagnosed 1 day ago

Have been suffering the symptoms for about 20 years

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Diagnosed 6 years ago (2007) aged 35, after 12 years of searching for answers. But the more I learn the more I believe I have suffered since childhood. It explains all the mystery illnesses I had.

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I was diagnosed just over a year ago. I had leukaemia (AML) at 16yrs old, MRSA, was diagnosed with Systemic Mastocytosis, Endomentriosis and severe migraines but all of my random symptoms still did make any sense and after 11 years of strange illnesses and 2 nightmare pregnancies, i got extremely fed up and began to research myself. i found out about BD and my drs were relieved to finally make sense of all that had been confusing them. i was diagnosed and put the usual meds but after ballooning from a size 8 to 14 in 7 monthsand getting high blood pressure... i decided the natural herbal route was for me and i changed my diet completely. im now 28, its still very hard but much much better than when i was on meds and my mind is much clearer.

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I was only diagnosed finally 4 months ago but I have been chronically sick since I was a teenager. So fed up with being misdiagnosed - first it was chronic fatigue, then Crohn's disease, then rheumatoid arthritis, the best one was when I got told I was simply depressed and needed to get out more. This has been both a relief and scary at the same time. I knew there was something wrong but am so angry I have lost so much of my life. I am now 43 years old and have been suffering badly for at least 20 years!

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in 1986, the disease Oral Aphthae, genital ulcers, psödofolikülit, Erythema Nodosum-like skin findings in Behçet's disease diagnosed with Istanbul University Medical Faculty Hospital front Anchor Oral Aphthae, genital ulcers, psödofolikülit, Erythema Nodosum-like skin findings in Behçet's disease was diagnosed.

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2 days a go but have been suffering for way over 10 years probably even had symptoms back in child hood.

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Within the last week - new to site so hello all!

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Hi ruby541,Today I had the final diagnosis of Behcet's and sjogrens- I'm also new to this site, hoping it will be helpful.:)

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Hi, 13 years ago and I had been unwell for 3 years prior...xxxx

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I have finally been diagnosed 2 months ago but told 3 years ago by my daughters specialist. Due to my daughter being so ill with BD, I put myself on hold. I have had BD for 22 years. Now age 41 feeling a bit better on colchicine.

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Diagnosed a few years ago, but had genital ulva a from birth and ulcers 53 years.jpeg gone through two years ofnot much, now had three severe flair up in as many months.what's all that about?

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about 5 yrs diagnosed but had symptoms for 35 years

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Last week, but I've had symptoms for 16 years.

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I jave had Behçet's for just over 30 years

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One month ago

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I was diagnosed in 2012 by my dermatologist. I had already done research before and found out I had it on my own. I suffered for years of not knowing what was wrong with me. Even though it's a struggle dealing with this disease,it is a relief to know what I have.

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I was diagnose 6 months ago, had symptoms for 20 years, I didn't get inflammation till 12 years ago,

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I've just been diagnosed, but have had it for about 11 years now looking back and joining everything up.

Currently having pulsed methylpred and infliximab to try and save my only remaining eye, as the other one is blind from flare 1.

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It's interesting seeing how many folk have had it for years, but have meandered through other diagnoses along the way until finally arriving at BD.

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Diagnosed in 2007 but suffering since the 1960's

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Only in the last few months, but have suffering with disabling headaches and left sided pain, along with right sided weakness for some 6 years now. Neuro drs were baffled I think? As every test came back normal. It was only when one of them thought maybe Behcets and I was sent to rheumatologist and he done his tests and said yes you have Behcets!! I am just starting Aziaoprine this week. not sure whats coming after yet. I have also been diagnosed with Amyloidosis too.

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I was formally diagnosed by Professor Hascard 15 years ago. I have had symptoms since childhood. I am now under Professor Fortune at COE London. I remain Behcets active and am completely fed up with the Daily battle of Behcets.

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I've had a lot of health problems over the years. However, over the last two I've had a combination of rather debilitating problems in combination with the usual Bachet's. My Endo is extraordinary and has pulled me out of a lot of horrible symptoms. He has me on 25 Hydroxy D which took my excruciating headaches away and he got rid of some blinding gi pains using an active form of Vitamin D. It is interesting to read about the hypovitamintosis with Bachet's. Lots of love to all

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Diagnosed for 15 years, suffering for 30 years. Seems to be less frequent and lesser symptoms as I get older, am now 63 years of age. However as most frequently in the last twelve months, many people are complaining about head, neck and shoulders and I have been suffering and degenerating much faster than the docs expected with this both Cervical and Lumbar for about 8 years now ..........I wonder if ther is a connection with BD?????

Billi

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Diagnosed 15years ago but had it for 25 years + had mild symptoms as a child but severe from 25 years ago.

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31 Years ago

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After 7 yrs of unexplained and misunderstood symptoms I was finally told that it is Behcets....now looking back most likely have had most all my life....oral blisters when I was very young, have been diagnosed with strep throat probably 17-20 times and mono 6....most likely Behcets all along. I have had pain, unexplained fevers, blister, liesons on brain, swelling, ribs causing a great deal of pain, loss of hearing in one ear, major fatigue and mood issues such as grumpy and cry at the drop of a hat. I do have other symptoms I am not sure of: Hot flashes at night and face flushing do not seem to be mentioned ...just wondering if this is Behcets or something different. Anyone have suggestions on either of these symptoms?

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I was diagnosed 15 years ago. I live in Australia but am English. I have had bad headaches and joint pains from as early as I can remember (maybe 5 yrs old) I was told it was growing pains. I am now 47 and still have may of the BD issues. My fear is my 2 children have inherited it from me as they have similar symptoms.

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After 15 years of symptoms but it turns out I had it as a child- age 7

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Originally diagnosed 1984.

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Hi I am new here, i am diagnosed with Behcet since 2008 so now its 7 years of this illness, but I keep a smile all the time :) even this pains are getting horrible, but heho, something that will stay with me all my life.

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I need help friends. I need to go back and see a doctor somewhere for more conclusive answers. The rheumatologist told me in all likelihood that we were looking at Behcets.

In view of that, I suffer most with the mouth sores. It's chronic. I may get a week if I'm lucky of a remission. But then it's back. I've had sores clear down my throat. Along with this comes feelings of extreme fatigue. I can often feel as though I'm coming down with something. I also have had repeated blood work that shows inflammation in my body. This stuff is so insidious. Would somebody out there give me some feedback? The more the merrier. No one can understand this stuff unless you have it.

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Sounds familiar

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I need to go lay down for awhile. 😣

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BTW... To all you girls out there. Is there anyone out there with sores in the mouth but no sores in the genital area?

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I lucked up with that too, but the mouth ulcers were bad enough. When the doctor added colchecine to my meds 10 years ago the mouth ulcers cleared up. Prednisone continues. One rheumatologist added Plaquenil about 3 years ago because of my knee pain and inflammation.... now Imuran has been added.... In short, 4 oral medications to get me stable. My current rheumatologist if convinced that I have aspects of Lupus too, reactive lupus if nothing else, that is impairing kidney function.

I guess my original diagnosis was hard because my symptoms were all over the map. Uveitis, horrible rashes, ulcers, headaches from hell, fatigue, and chronic pain. It dosen't help that I'm a female redhead with Irish/ English ancestry....Not the normal pattern there. Treatment has helped.... but I've had to take better care of myself as time goes on.

If you don't already do it, try swimming or just walking in a pool. Its relaxing and helps "center" you. Any level of stress will make your symptoms worse and if you can establish routines to take care of your physical and emotional health you will have fewer "episodes" of bizarre symptoms

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Hi they are still debating as to whether I have it! I have all the symptoms apart from genital ulcers . I have episodes of soreness and sometimes itching but no ulcers ! Hope that helps Hun! Jo X

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First symptoms when I was eight, diagnosed aged 42, after many misdiagnosis of self harm depression motor neurons etc. 

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Diagnosed this year (I'm 32), first symptoms when i was 7 years old!

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Diagnosed last month after 20 year diagnosis of Crohns was readdressed. As a child: tonsillectomy due to throat infections and ulcerations, pneumonia, gut irritation. As a young adult: Ashgutshlaghers (sp?)=growing pains, IBD, upper respiratory infections, mono, hypoglycemia. Young adult: Ulcerative colitis, upper respiratory infections, headaches, joint pain, blood clot. mid 20's to age 35: Chicken pox, crohn's diagnosis, migraines/simple complex seizures, stiff muscles particularly neck, TMJ, infections 3-4 times a year. Age 35-55. Vaginal hemorrhaging, chrohnic fatigue, fibromyalgia, Epstein-Barr, allergic reactions to medications and mold, spondilosis/degenerative disk, uveitis, stiff necks, pass blood clots from nose and bowel, chronic sinusitis, COPD, erythema nodosum, joint pain, electric shock pains, depression, memory loss and neurological changes. All I can think of right now. Started 30 mg prednisone last month and feeling alot better. Starting Imuran this week with high hopes:)! Daughter, age 28, diagnosed with BD just over a year ago. Thank you for this poll. I'll watch, learn, listen and help in any way I can. Thinking of all of you and stay strong and well!

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I am 81 years old and was diagnosed with Behcets Syndrome in 1966. At the time I was told that I was the 20th known case in the world. I have been taking steroids daily for 51 years. Due to the steroidsI have had 9 hernia operations. cataracts removed from both eyes. I am now recovering from a severe attack of shingles, which the GP thought it might be the Behcets that made the attack so severe (I was hospitalised). It is an awful illness

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30 or more

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I was 17 in 1970, (now 64) with my first symptoms of joint pains. Followed by oral ulcers in my early 20s. Then skin and genital ulcers in the late 80s. Then iritis. Then IBS, ileitis and diverticulosis. I was diagnosed with Behcets in 1990 - 20 years after my first symptoms and often been told my pains were in my mind!! Duh! Physical symptoms like red swollen knuckles and ulcers on my lips, tongue and gums. Now living with many more ailments, some caused by medications but hey I'm still alive lol.

Does that make me the oldest BD person in the group? 47 years.

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I was diagnosed less than a year ago after being mis-diagnosed with Herpes, Scoliosis, uneven leg lengths etc. etc. for 25 years. Only because I had recurrent eye problems, they started suspecting an auto immune dissease.

I might have had my first flare when I was around 10 years old, as I had to go to the hospital with Henoch-Schönlein purpura.

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nearly 30 years now, started with genital ulcers when I was pregnant, then my daughter was born with genital ulcers, we were whisked away into a private room at the hospital, all my visitors had to wear gloves and a gown, so scary, they didn't have clue what it was then

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I was literally diagnosed at London hospital last week. Although like many others say have suffered since a child. Problems with knees and my parents told it was growing pains, I had to do exercises with sand bags!!! I have suffered with severe ulcers since I was a teenager. My symptoms have deteriorated over the last few years and I have been off work since November last year.

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Odd how a lot more people are being diagnosed recently. They need to open more clinics and more trained doctors out there.

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