Apologies if you have seen this question posted on my blog page by mistake.....
Hello there everyone,
I was misdiagnosed for 12 years before I was finally re-diagnosed as having Behçet's.
Originally I was diagnosed as having Chronic Fatigue Syndrome but my GP back then had no idea that some of my symptoms like epydidymitis were not just random but relevant to Behçet's and then 2 rheumatologists failed to recognise symptoms I had but was never asked about or realise what they meant at that time.
I was also a diagnostic radiographer for 10 years working down in Dorset and Hampshire but I was forced to retire and then spend 8 years confined to my bed and living with my parent's who became my carers.
I have decided to work on a project about medical misdiagnosis.
As a diagnostic radiographer I studied anatomy, physiology and pathology for 3 years and patient care/hospital practice for 18 months before graduating where learning became a daily enjoyment.
I learnt a great deal about the importance of accuracy and how serious a misdiagnosis could be for the patient. There is some irony with what happened to me.
In NHS terms, your diagnosis is critical to your "treatment pathway" or "care pathway" so if you are sent down the wrong pathway you will not get access to the treatment or care that is correct for your diagnosis.
I would be tremendously grateful if anyone reading this who has been medically misdiagnosed before finding out they had Behçet's could tell me just two things....
1) what was the misdiagnosis? and
2) how long did you have to struggle with that misdiagnosis?
I do not need to know your name and I would never ask for personal details.
If you want to comment on how you coped then by all means but that is your choice.
And this issue is not just about Behçet's disease because any misdiagnosis can be critically important to the patient - even life threatening.
In time and after I have collected some statistics from real people, I would like to raise this issue with the General Medical Council because it seems to me that doctors have absolutely no accountability for making non-fatal or even delayed-fatal misdiagnoses.
Doctors who make these misdiagnoses just move on and up the professional ladder leaving their clinical misjudgments in their wake....
If they were pulled up on every case they got wrong - if they realised what their mistake had meant for the patient then they could be subjected to further education to stop them making the same mistakes again down the line.
Whilst the doctor has no responsibility, the misdiagnosed patient is often dealt a personal disaster and becomes a victim of a form of medical mistake or bad clinical judgement.
Some might say that this is a form of negligence.
If anyone would prefer to e.mail me "off blog" my address is Herbiv4@gmail.com.
Many thanks for reading this.
Sincerely,
Stephen Ralph. South Ayrshire, Scotland.
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Herbiv4
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Thanks for asking this question because I have gone through a long and painful road fighting with many doctors who all had their own simple answers for my many different symptoms and issues that I dealt with chronically. I am twenty-five now, but actually became ill during my early teen years. I then had a major surgery called the "Whipple procedure" at age twenty-one to remove a Choledochal cyst from my pancreas and biliary tract and my gallbladder and to repair the remaining bile duct and reconnect my liver and pancreas to my intestine. After this, I suffered many complications and rather than healing and getting stronger, I became weaker and more ill in the weeks following it. After a lengthy stay in the hospital, I finally received a diagnosis of "Addison's Disease" which fully came about from the stress of surgery on my body, and my immune system completely destroyed my adrenal glands. I wasn't actually diagnosed with Behcet's Disease a few years later just days before my twenty-fourth birthday. It's been a very long and rough eight years or so, and even though I finally have a diagnosis for my "mystery illness", I'm still suffering greatly and haven't come out of this bad flare that I went into four years ago following the surgery. This is just a bit of my story, but inbetween the larger details, I went through many different stretches of time where doctors were attempting to give me various diagnoses and each had their own silly and sometimes ignorant opinions for what was wrong with me. I live in Canada, so I'm not sure if any of my data can be used or is helpful, but here it goes anyways:
1)**as a teen I had very severe skin rashes and many different lesions would pop up all over my body, but mostly on my face and shoulders-- this was always being diagnosed as simple acne and I was always being given many prescriptions for different acne pills, antibiotics, and topical acne creams and gels; all of these only worsened my skin and the pills always made me sick to my stomach**
2) this lasted throughout my teen years and even into my early twenties.
1)**at sixteen, I had a vasculitic attack to my lungs, which at the time was being diagnosed at pneumonia and treated with various different antibiotics. The lesions and swollen vessels that showed up in my chest xrays and CT scans were thought to just be a pneumonia spot that was spreading. Even after having a bronchoscopy procedure, the doctors still tried saying it was just "residual pneumonia."**
2) this diagnosis of pneumonia lasted for nearly an entire year, eventually they just labelled it as residual pneumonia because I began getting better.
1)**many of my pains were said to just simply be growing pains**
2) this was from about age fourteen to sixteen.
1)**various vasculitic attacks to my legs and blood clots/thrombophlebitis was diagnosed at bleeding from taking too much Naproxen and Advil, even though I never even took any at this time**
2)doctors were blaming me for doing this to myself from ages seventeen to eighteen.
1)**my ovaries had been attacked and my periods had stopped, and I was diagnosed with Polycistic Ovary Syndrome (PCOS)**
2)I was being treated for this with hormones for nearly five months (I was seventeen), and then eventually the gynecologist I was seeing denied even having diagnosed me with it and told me she couldn't help me anymore.
1)** I suffered from chronic hive-like rashes and had problems with the sun and heat: both including artificial lighting would worsen my skin and bring upon an attack of various other symptoms including nausea, swelling of my skin and joints, pain all over, malaise, and fatigue**
2)this began at around age sixtenn and lasted up until about a year ago when I began Remicade infusions; I was diagnosed at age nineteen as having chronic idiopathic hives including solar (sun allergy) and cholinergic (heat allergy) urticarial-- I was being treated for this with OTC and prescription antihistamines until I was diagnosed with Behcet's at age twenty-four.
1)**when I was seventeen I suffered daily severe headaches that often put me in the hospital getting treated with i.v. meds; I was diagnosed as having simple migraines and also told that I was stressed from school-- it turned out that at this time, my immune system was actually attacking my pituitary gland ("Hypophysitis")**
2)this diagnosis was given to me at age seventeen and lasted until I was around nineteen-- eventually they seemed to diminish on their own and I stopped seeing the neurologist I had bee sent to.
1)**When I would go to the doctor or end up in the ER when I felt very ill, many of the doctors would accuse me of being depressed and lonely and would always kick my parents out of the room and ask me about my school life, my friends, if I had a boyfriend, etc.**
2)this lasted from about age sixteen until I was eighteen; at that time, I decided to not see anymore doctors because they never believed me that I was actually sick and would try so hard to get me to admit to being depressed and just pretending to be sick for attention.
**my symptoms seemed to settle down and go into remission until I was twenty-one when I became ill from the cyst, and also I had many symptoms of low-cortisol and of Behcet's as well**
1)**a vasculitic attack was thought to just be a kidney infection, and lesions in my urinary tract were treated as UTI's, even though I tested negative and numerous antibiotics did not help**
2) this was over a couple month period at age twenty-one.
1)**when my joints began flaring up badly at age twenty-one with severe swelling and pain, I was told it was a side-effect of the steroid I was taking as cortisol-replacement**
2)doctors would say this to me several different times over a couple month period.
1)**my extreme fatigue/exhaustion was thought to be chronic fatigue syndrome and some doctors thought it was because of the surgery, saying that my body didn't fully recover yet, and then others said I wasn't getting adequate cortisol-replacement**
2)this went on for a long period of time, over about two years or so, until I was diagnosed with Behcet's.
1)**at age twenty-two, I was clinically diagnosed with Porpyhria**
2)I underwent several different urine collections and genetic testing, which all would come back negative, and eventually the diagnosis was taken away, although the hematologist I was seeing did admit that I was sick with some kind of rare autoimmune disease, he just didn't know what exactly.
1)**at age twenty-two I was examined at the hospital's rheumatology department and was diagnosed with SLE lupus, it was a clinical diagnosis because my ANA was negative and so were various other antibodies**
2)I was being treated with HYdroxychloroquine and Sulfasalazine for several months, until one of the rheumatologists took away my Lupus diagnosis, and told me they could no logner help me.
1)**One specialist I saw had diagnosed me with autoimmune polyendocrine syndrome because I had Addison's, the attack to my pituitary, and my ovaries were attacked-- while in some way I kind of do have "polyendocrine disorders" I don't actually have the true disease**
2)I was given this as the diagnosis of my mystery illness, but it only lasted a couple of months at age twenty-three, because other doctors disputed the fact that was what was making me so sick.
1)**over time, I was told to take better care of my mouth because of my inflamed gums and my oral ulcers**
2)different doctors would tell me this over a period of about three or four years.
1)**my shooting and stabbing nerve-like pains were diagnosed as being fibromyalgia, and I was even told that my pain meds I was taking were just making it worse for me and I was accused of being dependent on them**
2)this happened over a period of a few months and often occurred during ER visits.
1)**my severe nausea and vomiting was said to be caused by my pain meds or by my diet**
2)this occurred from around age twenty-three to twenty-four.
1)**when I was extremely sick in the hospital, prior to my diagnosis, my feet and hands were completely raw with deep open ulcers and would spontaneously rip open and bleed because they were so swollen**
2)for the entire two weeks I was in the hospital, I was being accused of cutting myself, and even taking a razor blade to my hands!
1)**More recently, even after being diagnosed with Behcet's now for a year and a half, my family GP told me I had Celiac Disease and that was probably why I was swelling so much and was always sick. My specialists had also retested me, while still eating gluten, and they were all negative**
2)I went on a gluten-free diet for nearly two months-- I wasn't noticing an improvement in my symptoms so my specialists re-tested me after I went back on gluten, and they were negative.
***Basically all of my different Behcet's symptoms were being diagnosed or said to have been caused by other things in which doctors would try coming up with some simple or sometimes even ignorant explanations for*** I have probably forgotten some others as there were so many! I also apologize for how long this got.
My goodness Jenna, just reading this is quite traumatic - what an absolute nightmare.... Are you being treated effectively now?!?! This really is an issue to look into. My story has nothing on this, it's making me realise just how lucky I was to be taken seriously.... Really am left reeling from reading that....
I'm sorry that my post ended up being extremely long, but thank you for reading it. Looking back now, it definitely all seems almost unbelievable, and I honestly don't know how I made it through. I do know there were many, many times where I thought I was going crazy and asked to be sent to a psychiatric ward.. and it was during those times that the nurses and my family would tell me that I was very much strong and sane because people who need to be there don't ask to go. My parents were definitely my life support in helping me through all these rough patches, and still are helping me out so much.
Two years ago, just before my 24th birthday, I was searching the internet desperately because I was being sent to see a new rheumatologist outside of the hospital system at a private clinic. I was nearly giving up because my exhausting search was only bringing up all the same old diseases that I had already been tested for, and I was searching Youtube for videos of my favourite show "Mystery Diagnosis", and I came across one with a lady named Joanne Zeis who had Behcet's-- it was so crazy because it then hit me that I had seen this episode years earlier but had forgotten about it and after watching it again, I knew that it had to Bechet's I had. I
went to see this new doctor and was ready to demand him to test me for it, but to my surprise, within five minutes of talking with him, he told my Mom and I that he was nearly 100% sure I had Behcet`s. He further went through my medical history and my family medical history and examined me, then said he had to do some more bloodwork just to rule out other things and test me for the HLA-51 Behcet`s genetic marker. It was two days before my birthday when I got the phone call to come in to see him again, that day, and he officially diagnosed me with Behcet`s. That was the best birthday gift and was a true blessing I could ever receive. My Mom and I nearly kissed the doctor!
That was 2 years ago now, but I`m still in the same bad flare that began 4 years ago. I`ve been receiving maximum doses of Remicade infusions every 6 weeks for just over a year, and the only thing it has really helped with is my skin rashes and heat intolerance-- But I still feel extremely grateful that at least I know for sure that I`m truly sick and to know what it is helps ease so much anxiety and frustrations.
Sadly enough though, I have still had some doctors in the emergency room that have tried disputing my Behcet`s or have tried blaming my uncontrollable symptoms on something else-- just recently I had to go to the ER because my pain was spiking out of control and my legs and feet had swelled so much they were ready to burst-- well I ended up checking myself out because the doctors wanted to stop my pain meds, blaming all of pain on constipation and were trying to shove a bunch of laxatives down my throat and do an enema. It was ridiculous. Now when they start treating me like that, I just stand strong because I know what is wrong with me now and I don`t have to put up with it anymore.
I really feel for those of you who are desperately searching for answers right now, and can`t find a doctor to believe you. All I can say is that try to remember that you know your own body and know that something isn`t right... don`t let those ignorant, uncaring so-called professionals bring you down. I had to give up on the doctors many times and stop seeing any of them for stretches of time just to regain my strength and sanity. Even after all this crap I went through (and this is just an outline of it all), I still eventually made it to my destination of a diagnosis.. just keep holding onto hope
1) my difficulty breathing was diagnosed as asthma when I was 14;
2) I was treated with various inhalers and powder disks like Advair until I was around 16.
1) I was being told that my fatigue and exhaustion was chronic fatigue syndrome and told that I would have to live like this and just learn to adjust;
2) this lasted for only a few months because eventually one of my doctors told us that chronic fatigue is not an actual disease in itself, but is a symptom of an underlying disease.
1) I had an immunologist/allergist tell me that the linear rashes I would get was "hypergraphism" which basically means that I was scratching myself;
2) he stood strong on his so-called diagnosis for about 2 months, but eventually he gave into the fact that these rashes were in deed occurring spontaneously.
1) when my hands are attacked, the swell up and get super hot, the skin dries-up and gets scaly and then begins cracking open and bleeding and often raw ulcers start appearing as well-- this all causes such severe stabbing pains that it makes me cry-- the same dr. that told me I was just scratching myself, said it looked like psoriasis, and then he came up with a clinical diagnosis of "Erythromelagia" (which is basically the opposite of Raynaud's where the blood vessels in the extremeties actually dilate and therefore, get too much bloodflow;
2) I basically lived with this as a diagnosis of my hands until I was diagnosed with Behcet's (so about 3 years), at which time, I realized that I don't have the actually disease, but rather its just another symptom of the Behcet's which mimics it.
Hello Stephen, I was told that l perhaps had ME and was treated like a time waster for years until l became so ill that l could barely walk and lost a huge amount of weight. l was unable to eat as my joints in my body were so painfull that even my jaws were so sore l couldn't chew food. When l developed genital ulcers my doctor told me to go to the VD clinic in the Royal Voctoria Hospital in Belfast and it was there that an imunoligist diagnosed Behcets. l had to fight for benefits and was told by a board doctor that if l could eat bread and drink water l would be fine. l wrote to the chief medical officer of Northern Ireland and he replied that the doctors comments were perfectly correct. lt wasn't until the diagnoses of Behcets that l was given a low rate of DLA. l am now being told by ATOS that l am fit for work despite being almost bed ridden most days and l am actually seeing my doctor today to get a letter to say l am unable to attend a work activity club. For some reason Behcets suffers are not understood. lt isn't a visual illness and is not outwardly evident so most individuals feel it doesn't exist. Alex.
wow you guys have had it tuff and still smiling .well hear is my little boring story .
i think it all started with me when i was about 5 that is when i had my fist tooth taken out .by 8 i had all my front teeth out and had false teeth pit in from then to now all ways had bad teeth and i am just about to have an op to have the last 4 ( all i have ) out and fixed . i never smiled as a kid well not even now .
then when i was about 8 or 9 i suffered tummy pain all the time my mother was told my body was changing i was growing up it was nothing just some tummy ulcers given some med's and told i would grow out of them . then the bad headaches started and over my teen years they just grow and grow i did not think pain could be so bad . the DR put me on the pill to see if that would help but no .
at 19 i was married headaches pain still growing had fist baby at 23 next 24 from then on my headaches went to migraines i think i was given every treatment and drug known to man eg: cryogenics, morphine,pethidine,lidocaine infusions ,opium ,marcaine injections,(in to head face eye ) grass ( that made me sick ) and there were a few more things . i have just trend 50 and can;t think of a day i have not had a headache . in my late 30th's i was told my joint pain was arthritis and you will just have to live with it . 7 days ago it has been 7 years i was told i had BD now all the pain and funny things that have happen to my in my life and i am would think there is a lot more to come i can deal with most things but it is the pain I have that i can't handle 24/7 you can only cry so much .
but i will not let this bet me . i hope this helps in some little way if you wont to know more just ask .
I can really relate to what you have said. It`s so sad that we have to fight for everything-- from having dr`s believe that we`re sick, to getting a diagnosis, to getting proper treatments, and then to get help financially so we can survive. It`s horrible that Behcet`s is still so misunderstood or not even known in much of the medical community. I read somewhere that Behcet`s is considered one of the most debilitating and painful chronic diseases to live with-- then why is it that so many dr`s don`t believe we are suffering as greatly as we are, or how much pain we really are in-- and how come our disease doesn`t qualify us for any financial help or even support services, even though mental health illnesses do (I don`t mean to demean them because they are real and debilitating illnesses, but I`m just trying to make a point)-- someone can put down on their request forms that they are depressed and will qualify for all kinds of disability services, and yet we cannot.
I recently had my doctor fill out some forms so I could send them off for government disability benefits, and he said he was going to say I was depressed because otherwise they wouldn`t take it seriously... I couldn`t believe it! I freaked out because I said I`m not depressed, I have a very rare and extremely painful disease that I have no control over and I can`t survive on my own because of it. It was ridiculous.
I`m extremely blessed and grateful to my parents for looking after me and I still live with them, but I still wish I could eventually have some independence. It won`t be fair to my mom and dad to be looking after their 30-year old child, if things continue the way they are. I got turned down for any benefits because apparently I didn`t work enough over the last 4 years--- like seriously... do they not understand that I couldn`t work because I`m very sick. This disease takes so much away from us, and it really isn`t fair.
Ican`t even get into see a physiotherapist at the hospital who deals with more special cases... it has a 1 year waiting list because any openings go first to elderly people and then to people on worker`s compensation. So now I can barely even walk because my muscles and joints have all stiffened to the point that they are like wood, and when I do try to do stretches on my own, I just end up hurting myself worse. Anyways, sorry for my little rant... I`m going to stop now because it just angers me when I think about it all. I wish that we could all just scream out at the top of our lungs for someone to listen to us! Hope things will work out for you and take care
Hello Jenna, it really is a minefield of who believes us and who dosen't. l was with my Doctor yesterday as ATOS want me to attend a work activity group which is out of the question as most of the time l can barely get out of bed. He said there was no point in giving me a letter that they ignore them and to go to the group to let them see how ill l am. l am dreading it as l am a widow and live alone and if they stop my benefits l will loose my home. The stress is causing my illness to worsen it is so upsetting. l have read on the black triangle site that the suicide rate has rocketed because of the governments treatment of the disabled. lt is a disgrace that through no fault of our own we are being punished. Anyway, l hope things improve for you, all the best Alex.
I had numerous bouts of 'tonsillitis' from a very young child but this and repeated mouth ulcers were the only problems I had until aged 24, when I had a complete physical collapse.
It was diagnosed by a hospital consultant as ME (very fashionable 25 years ago.) Looking back I can see that it was, of course, Behcets - joint pains, exhaustion, headaches, muscle weakness, ulcers, stomach problems, memory/concentration problems etc.
After complete bed rest for nearly a year I recovered to a reasonably good extent, though never back to the energetic person I had formally been. I changed my lifestyle accordingly and things were okay until a couple of years after the birth of my 2nd child. Then everything started up again, with the joint pains and ulcers (now genital as well) becoming severe.
My GP was very sympathetic and sent me for lots of tests, including for STIs (which I knew wasn't the case!) Eventually a biopsy was done on one of the genital ulcers by a consultant gynaecologist - a grim procedure but the biopsy result came back as "entirely consistent with Behcets Disease", so that - along with the other associated symptoms - meant I was given the diagnosis of Behcets with a lot of certainty on the consultant's part. What a relief, after more than a decade of knowing that ME was just not correct.
However, my GP refused to accept the consultant's diagnosis. To say I was upset is an understatement! I wanted to understand what I actually had, and how it could be treated so I could try to get my life back on track.
The GP was keen for me to 'accept' that I had Chronic Fatigue Syndrome, as he termed it. He then decided I might have Lupus. Or a stomach ulcer. Basically, he said, he wanted us to keep an open mind in case the consultant was wrong - he said that he had other patients whose diagnosis changed and they had found this very difficult. He felt it did not matter what the disease was called anyway...I tried to explain that it mattered very much to me, the patient - but could not get through to him.
I think this GP was well meaning, but for me it was a disaster. I felt like I was hitting my head against a brick wall, and using up so much energy I didn't have...it was a very upsetting time.
Anyway, I changed GPs and have had no problems since then - with GPs or consultants. Some may not know much about Behcets but they accept the diagnosis and I am treated accordingly
I also experienced a similar thing a couple of years ago, prior to my Behcet's diagnosis. I was told by a rheumatologist that it did not matter what the name of the disease was. She told me that what counts and is important is for me to feel better... but what these doctors seem to forget is that without knowing exactly what disease it is, then how can you get better without the proper treatment? For people who are supposed to be very intelligent professionals, they sometimes act clueless. I could kind of see her point in a small way; but its not only important because of the need for proper, disease-specific treatments, but also for our own peace of mind. Without knowing exactly what it was that I had that was making me so sick and causing so much pain, I was so scared and full of so much anxiety. Sometimes I was so afraid to go to sleep at night because I had no clue if my mysterious illness was life-threatening or not. Also, without having a positive diagnosis to label my mysterious illness, I often doubted its true existence and would go through weaker moments when I believed I was just imagining it all or was going crazy. The doctors in the emergency room would very quickly treat me as a "drug seeker" especially because at that time, I ended up in the ER with severe pain attacks, but had no known reason for the ongoing pain. I even had a "pain specialist" who dealt with weaning people off painkillers come see me during one of my bad Behcet's attacks-- she actually stood there at my bedside telling me that I needed to stop demanding pain meds before I become fully dependant on them-- the dumb thing was that I wasn't even on around the clock pain management at home during this time and that's why I ended up in the ER when it would get bad enough. She couldn't grasp the understanding that I was truly experiencing as severe of pain as I was, mainly just because I didn't have a diagnosis of a disease. So I very much agree that getting a proper diagnosis is vital to a person's well-being, both physically and emotionally.
So sorry to hear about your experiences too, but how right you are: it is not just for our sakes that the patient needs a named diagnosis if at all possible.
Without a diagnosis we know what the realities of dealing with the medics will be
A named condition also helps our families, friends, colleagues and bosses to understand what's going on.
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(clinically)Diagnosed today after 2 years of suffering and wondered whats next
Behcet's how do you cope
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