Misdiagnosed before Behçet's?

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 was forced to retire and 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 mean for the patient. There is some irony with what happened to me.

In NHS terms, your diagnosis is critical to your "treatment 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.

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 cases they got wrong they could be subjected to further education to stop them making the same mistake twice or even more 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.

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.

21 Replies

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  • Bravo

  • Thanks very much :o)

    It's tough going and will take plenty of time.

    Prior to this project I had to almost literally fight the NHS for over 18 months down in Lincolnshire to get my younger brother an assisted living placement - he has Asperger Syndrome.

    Against hefty odds - I won that battle.

  • Hi Steve

    Good on you

    1) what was the misdiagnosis?

    Coeliac Disease (this was before the new blood tests were available). I had a spike in my coeliac enzymes and was told I had coeliac disease for about 2 years before that was discarded.

    Also because of the punched out lesions etc a few dermatologists labelled me as doing 'self mutilation' but as the specialists now are saying I was presenting with oral and genital ulcers at the same time and as one doctor said that should have been a 'red rag to a bull'.

    Years ago I was told I had chronic fatigue but one doctor said that was a symptom not a diagnosis which makes sense as a lot of diseases cause chronic fatigue.

    2) how long did you have to struggle with that misdiagnosis? - 10 years

    Hope your project helps others.

    Lesley

  • Many thanks Lesley... You experience with the dermatologist sounds familiar to me.

    I was told by a dermatologist in Lincoln that my skin lesions were caused by obsessive scratching - Prurigo Simplex. At one point I had seen around 6 specialists who told me I had six different individual conditions relating to their respective single symptoms.

    The incompetence I have seen............

  • Hi Stephen,

    I am still struggling with missed diagnosis. You will hear about it if I ever get a diagnosis! I'm trying to raise awareness on PhoenixRising ME/CFS Forum, of Behcet's Disease.

    I've been seen by 3 Rheumatologists now, one being my main one. I've also seen 2 Immunologists over the last 20 years, one being my main one. I've seen 2 Opthalmologists, also 2 Dermatologists.

    Currently seeing a Neurogeneticist.

    In August I will be seeing a Prof in Immunology/Rheumatology/Opthalmology.

  • Hi there - am really sorry to read this :-(

    The best advice I can give is to collect digital photographic evidence.

    My breakthrough was taking two digital photos of my knees that go all hot and pink and obviously swollen at night when heated under the duvet.

    During the day they look normal. My new GP took one look at those photos and immediately put me on anti-inflammatory medication.

    He then advised I collected photos of my occasional mouth ulcers and my skin lesions that happen in places I cannot reach to obsessively scratch like my back.

    But then again, I took my archive of digital photos on a disk to the Queens Medical Centre in Nottingham - a massive technologically advanced teaching hospital.

    When I offered the disk to the rheumatologist he handed it back saying that "we don't not have the facility to view those images."

    My Ghast was so Flabbered it needed to lay flat in a darkened room for several hours afterwards.

  • Yes, one never knows how photos will be received! I recently took some to a genetics clinic, and they were well received. They kept copies. Another time I took some eye photos (transient shrunken eyeballs!) to an Opthalmologist and he was not interested!

    I don't get mouth ulcers anymore, so there are none to photograph. I don't get the back sores since I stopped drinking coffee, as coffee turned out to be a trigger.

    Getting more Neuro & circulation issues now. Thanks for sharing your experiences.

  • It took 20yrs to diagnose my behcets. Kept being told that joints were down to arthritis and general wear and tear, Fatigue was down to too many late nights and ulcers down to bad oral hygiene and genital ulcers were herpes.

    I ended up in hospital with another problem, where after talking to drs (different hospital) they realised , with all other problems, it all added up to behcets. Since receiving the right treatment I have improved and for most of the time it stays under control although still have flares of differing degrees.

    In a way I was lucky to be in the right place at the right time when I got diagnosed, as I do really think that if I had continued to see someone at the first hospital I would still be undiagnosed and not on the correct medication.

    With regards to my bones, I was found to have very little wear and tear and a higher than average bone density (which helps while being on long term steroids)

  • Hello there kenjay - unbelieveable - shocking :-/

    These doctors are so poorly educated and that poor education is causing patients so much unnecessary suffering.

    It's such a casual thing for doctors and they do not have a clue as to the profound harm they are causing patients.

    Every one of the doctors who failed to recognise your Behçet's should be contacted as routine and informed that they failed to recognise a diagnosis.

    The only way the medical profession will improve is if they are made to learn from their poor clinical judgements and their diagnostic mistakes.

  • Hi kenjay

    i also have dence bones i was told my femurs are nearly 4 times denser than normal and my pelvis over 3 times . It would be interesting to know if this is just a coinsidence or do other BD patients have this.it is a good excuse for my weight anyway.

    kind regards Carol

  • My bones are very dense as well despite steroids (which the doctors are surprised about). Could someone put it up as a question or blog and see what others have to say?

    Lesley

  • Just wanted to say thanks to all of you for replying to my question.

    Have realised now - being a newbie - that I should have posed the question in the questions section but I hadn't found that soon after joining this group.

    Anyway, if anyone else sees this and can add to the list I'd be really grateful.:o)

  • So I have gone to the top, so-to-speak, and have been given the diagnosis...CFS.

    I still think I have had Behcet's all my adult life, without knowing at the time.

    I now think I have more spinal & Neuro symptoms & have developed thrombophlebitis on one occasion.

    I think surgery & anaesthesia has caused it to flare.

    The fatigue is overwhelming & breathing is grossly affected but routine resp tests don't show what is going on.

    Why is there a conspiracy not to diagnose this disease? Is there a controversy that we are not told about?

    Why are we not taught this disease exists?

    How is it that one can consult a general surgeon who diagnoses folliculitis & understands one is immune compromised & yet consult 3 Immunologists & not one can diagnose Behcet's Disease? What next? A 4th Immunologist?

  • Hello there,

    You may be interested to know that the National Institute for Health and Clinical Excellence aka NICE classify CFS as an illness of the central nervous system.

    However, psychiatrists have dominated the whole field based on their belief that CFS is the same as Neurasthenia or in other words CFS is in their view a functional mental illness that can be effectively treated with cognitive behavioural therapy and graded exercise therapy.

    This belief has spread like a cancer within the medical profession over the last 20 years from GP's to specialists across the NHS.

    The problem is this - once a patient has been handed a diagnosis of CFS, that diagnosis is incredibly difficult to overturn.

    Invisible physical symptoms that are "medically unexplained" are being diagnosed as CFS by doctors who are not sufficiently qualified to recognise the presentation of a rare disease such as Behçet’s disease, Ehlers Danlos Syndrome or Familial Mediterranean Fever as just three examples that probably include other rare diseases.

    We now have a healthcare system whereby ill qualified or experienced doctors are diagnosing CFS and in the process of doing so they are misdiagnosing some patients that over time must add up to a significant number of clinically misdiagnosed patients.

    I saw two rheumatologsts and a GP initially and none of them knew enough about my set of symptoms that with hindsight all matched a diagnosis of Behçet’s disease and because of their failures I ended up with a diagnosis of Post Viral CFS.

    During 2004 I met a new young GP after moving house and he happened to have a friend who had Behçet’s disease so looking through my notes afresh he said that I needed a complete re-appraisal.

    I then saw a rheumatologist, an immunologist, a dermatologist, another rheumatologist, another immunologist, an eye specialist in London followed by another immunologist. On some of those occasions I saw their junior colleagues first.

    At all times I had the support of two GP's and as I'm a retired radiographer I was able to show them factual information sent to me by the Behçet’s Syndrome Society that proved that what these doctors were writing in their reports was factually incorrect.

    Faced with this persisting diagnosis of CFS that hung firmly around my neck I found it impossible to get these "specialists" to re-consider my CFS diagnosis even when I showed them photographic evidence.

    Four years passed by in no-mans-land after 8 years of CFS misdiagnosis

    Eventually I saw another rheumatologist in Scotland and this time my photographic evidence was looked at objectively and I was diagnosed as having possible Behçet’s disease.

    I then started Colchicine and noticed a small improvement in my arthritis and additionally my infrequent mouth ulcers stopped appearing.

    I then received a confirmed diagnosis of Behçet’s disease during 2009.

    Why did I had this battle? I have a pretty good idea. One of the issues was the fact that I'm a retired radiographer and doctors do not like it when a lower healthcare professional tries to challenge a diagnostic opinion.

    Another bigger issue is the fact that once you are given a mental health diagnosis, all your physical symptoms are just attributed to your functional mental ill health.

    I know of at least 10 people now who have passed away since I started campaigning back in 1997.

    Some had cancer but were not diagnosed until it was way to late, some had undiagnosed cardiac pathology and some had autopsies that discovered spinal inflammation that had never been recognised because nobody bothered to look.

    Two committed suicide from years of clinical abuse.

    So this is a BIG issue and I am now working on a campaign to put this whole problem in front of the NHS and the medical profession.

    I can really sympathise with your battle AusBehçets.

    All I can suggest is that you gather your own photographic evidence and keep on going as I did.

    I am now focusing on the issue of doctors diagnosing outside their area of competence.

    It would seem that patients with rare diseases were never thought about when the diagnosis of CFS or ME was made available to GP's, psychiatrists and general specialists right across the NHS.

    Over a period of 20 years I dread to think about how many patients must have suffered a clinical misdiagnosis by doctors diagnosing outside their area of clinical competence.

    And they did so because they had no detailed super-specialist knowledge of the wide presentation of rare diseases that can present as an apparent case of Chronic Fatigue Syndrome ie. without any visible signs on examination to match an almost identical set of "invisible" symptoms relating to both CFS and established rare seronegative autoimmune diseases.

    I wish you well.

    Sincerely,

    Stephen.

  • Thanks for your reply Stephen.

    Though in words I was told 'CFS', when I now read the written report, it has been changed to chronic fatigue. In a way that is good as it leaves the diagnosis open.

    In another it is bad, as it almost certainly delays correct treatment & leads to forced treatments that can be harmful.

    At least the letter acknowledges that I have been diagnosed with having Mycoplasma infection & have commenced treatment on Doxycycline & Nilstat.

    This diagnosis was made by my Integrative GP along with Postviral CFS 16 yrs duration.

    This GP will also be considering if Lyme Disease is involved.

    I have read of Mycoplasma & Lyme Borrelia being associated with Behcet's...another interesting aside!

    Mouth ulcers & skin sores were years ago now, so cannot photograph. But documented.

    Picture now is more folliculitis, cellulitis, Neurospinal inflammation, chronic Mycoplasma infection.

  • Sorry if I'm not making myself clear.

    So my Professor has diagnosed 'chronic fatigue'.

    My Integrative GP has diagnosed Postviral CFS caused by chronic Mycoplasma infection.

  • Hi I started with joints, fatigue & ulcers over face, up nose & down below at the age of 17, in bed for 3 weeks. Doctor put it down too glandular fever, but this never showed on blood tests. Then the gynocologist thought the ulcers were herpes, again after 5 years of burning & cutting out all were negative.Then I had polycistic ovaries, endometriosis & had 5 ops to clear. I finally had enough & went travelling around Australia for 5 months at 25 & this helped my whole body.

    When I was 22 my younger sister died in a car accident and my body had a massive meltdown. Stress is my enemy. I was told I had chronic fatigue syndrome.

    Now 41 years old I have started colchicine 2 months ago & feel heaps better, even my face doesn't look like that of a teenager with pimples. My daughter 11 has BD far worse than myself but it was her gynocologist 3 years ago, that pieced my body puzzle together.

    My daughter will not have to go through the gynocologist torture that I had to endure. Thank goodness for a little bit of good out of time and medical advances.

  • I had a polyp removed from lower bowel. Immediately I ceased to get monthly spasms of bowel that coincided with period first day. The bowel would spasm with first bowel movement of day. So I now think there was endometriosis tied up with that. Very weird but much relief! Missed as the camera went in & seen on the way out as it was hiding behind a turn in the bowel. Sorry for TMI everyone!

    Interesting that travelling helped. I am sorry for the loss of your sister.

    I think I have had step-wise worsening of health after each anaesthesia & procedure/surgery. Most recently sigmoidoscopy, vag repair of rectocoele, cystocoele, & sinus surgery. Maybe Gynaecologists understand Behcet's better than Rheumatologists & Immunologists? Also General Surgeons seem to better understand it.

  • What was the mis diagnosis? Perhaps the lack of diagnosis was the misdiagnosis for me. My most prevalent symptoms were uclers in the mouth and throat. I used to consult an EENT for mouth ulcers - which were alternatively called tonsillitis or pharyngitis. I hesitate to say that I was diagnosed. The doctors took a look and straight away treated me for tonsilitis and pharyngitis (after the to tonsillectomy).

    I had joint pains even as a child and was given anti inflammation meds - but my condition was never really given a name. Sometimes it was chucked off to my imagination.

    The peculiar thing is that all my symptoms disappeared for quite a stretch of time (say 6-7 years). Then suddenly, I had uveitis and my condition was eventually diagnosed as probable behcet (mainly because had only 2 of the 3 symptoms).

    I fully appreciate the need for a correct and timely diagnosis. But there are times when i view my lack of diagnosis as blessing in disguise. Being undiagnosed, I had the naive courage to push myself to my limits (of course getting ulcerations eventually) when i was younger. If I had been diagnosed earlier, i would have known of BD's cruelty and my fear of this monster might have taken the better of me - and i might have thrown the towel sooner.

  • Good for you, I hope you go through with this project. It truly does help to have a diagnose and a proper one at that. In our case, at least, they put a name on it even if we are not sure as yet what we have. I will keep you informed if things should change for us. Not sure just yet!

  • I was officially diagnosed with Bechets in 2014 after suffering from a case of Stevens Johnsons Syndrome from taking an antibiotic. I get Bechets in most of my mucosa but also on my body and face. It's rough. I am exhausted and so tired of the bull crAp I am put through on a daily basis because of my health issues. I also have EDS and had a emergency discectomy in 2012. I have arthritis and joint issues to boot.

    I work out. I eat well but Bechets flares when it wants to and it stops me in my tracks. I had strep in my leg in 2011 which lead to sepsis and emergency surgery. 11 days in the hospital and a wound vac for 8 weeks. Just recently (August 2016) I had a small hole form in my thigh. Given my history I was in the ER within 24 hours. Because my Bechets flared on my face and body, I was accused of being a Meth addict!!! Due to my scars from Bechets and from prior surgeries (one being a cyst removed from my face as a child) the doc made a decision, unwrapped my leg and had me leave with a open and weeping wound. My husband is a firefighter and LVN! He was livid that they were trying to make me leave the ER with a 1/2 inch hole started in my leg, uncovered!! Three! Three trips to the ER before they hospitalized me!! Three! Did I mention that I had surgery the day before the hole in my leg started (the surgery was in another area) and I was running a 102.5 fever! I am at a loss and filing a complaint with the Hosptal. Turns out I had a bad staph infection. My leg swelled from my thigh down to my mid shin! Bright red and inflamed. Thank God I was put on a two day Iv course of super antibiotics and Iv and pill pain medication. I went home on 10 days of antibiotics. The first ER visit did not even culture the wound!!

    So not only have I been given the run around in regards to having Bechets but I have also been unjustly judged and neglected. It sucks. At some point some doctors stop listening. Some become jaded and others just lump us into categories where we do not belong. I do my best to maintain my health. I work out. I eat right and I am hygienic. words can not explain how scared and anxious I get whenever I have to go to the doctors. For anything.

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