Hello, I am currently putting together a proposal to do a study about patient’s experiences with lupus/ other CTDs. Having personally experienced some very good and some very poor consultations recently and read posts about similar experiences, I’m thinking focusing on patient views and experiences of how to improve patient/ consultant interaction to enhance correct diagnosis and management.
If I get ethical approval, I’m hoping lots of you would be happy to be interviewed please?! I really think a scientific paper will have the widest reach to improve the situation.
So in order to get the proposal accepted I need to demonstrate the necessity so I’m planning on detailing some of the weirder mis diagnoses and ones we find most offensive and unhelpful. From other posts and speaking to people I have:
Menopause, health anxiety, functional disorder, alcoholic, scurvy (that’s my current favourite!), depression and a lot of ‘it’s all in your head’ !!
So please can you send me any ideas to include in the paper, anything you want to see improved or has worked well and your worst mis diagnosis (message me privately if it’s not one you want shared - I will of course anonymise if published)
Thank you!
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Melba1
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I've had, MS, cerebral aneurism, panic attacks and all in my head. Shocking really, especially given the fact that they were all aware that my Mum died of lupus when she was 43 xx
A slipped disc, trapped nerve, stress, depression, functional neurological disorder, ‘in need of cbt therapy’....... my final correct diagnosis was antiphospholipid syndrome with lupus like syndrome.
Hi I went to the gp about 10/15 year ago with painful hands at the time I would have been 35ish I was sent for X-rays when I went back to the gp he looked at my hard skin and callous on my hands and said what on Earth do you do for a living I said I’m a carpenter to which he said there’s noting I can do you are wereing you hands out and for the next ten yrs I believed him then 18 mouths ago at a dermatology app by chance I get a rash up my neck and across my face right in front of the consultant refural and 3months later it’s lupus/ctd !
I know it’s a big lol isn’t it! On a serious note I think this is a very good idea - have you had much previous experience of research? I ask because I’m hoping to undertake a PhD as an artist trying to represent invisible disease processes in my miniature artworks. I’ve got a place and potential supervisors but I need full funding. I would work with patient groups and medical professionals to gather imagery - got lots of new techniques I want to to explore as well.
Here in Scotland we have a chief medical officer, Dr Catherine Calderwood, who’s most recent annual reports have been about Realistic Medicine. The philosophy she subscribes to has much in common with Atul Gawande’s. Very interesting and may be useful to your research if you can download and read it. beta.gov.scot/news/realisin...
Thanks twitchy, it’s actually partly your posts that have inspired me to take action!
Yes I’m a public health researcher and my recent research papers have been qualitative research on patient experiences. Im working on a different study currently but my professor supports it - long process for funding etc but actually I’m happy to give my time for free as feel passionately about improving this!
That’s great you’ve got an idea, place and supervisors - funding is always the last to come, my colleague has put in 10 applications recently!
I’m very flattered that my posts have inspired you in this way. I mentioned the Realising Realistic Report because I was asked to feature in a documentary about it - as a person with lived experience answering questions about my expectations of doctors.
10?!!? Oh dear I don’t think I’d have the patience to apply for 10 different funding potential sources - I’m just focussed on one March deadline at the moment.
I know I should be researching further funding sources but somehow - between medical appointments and fatigue etc - I have decided to focus on working on my art practice for a few hours a day instead. My art work is very intense and detailed so I have to prioritise it when I can. It keeps me relatively sane!
I have my consultation at dental hospital this morning - shall be asking oral med consultant about her diagnoses of myofascial pain versus small fibre neuropathy or Trigeminal Neuralgia. Also need to discuss the apparent “sitting time bomb” under one of my molars - right by my trigeminal nerve.
I’m never a happy bunny with medically unexplained symptoms! X
Thank you- I certainly will if it gets to that stage but have to submit to the university and ethics first. At this stage it’s just info that’s generally shared on here anyway
I had "learnt to collapse at the sight of blood". Neuro related collapses were one of my 9 out of 11 symptoms of the American society of Rheumatologists guidelines for diagnosis. Plus I had previous episodes of severely low WBC and neutrophils.
The collapses were as a result of autonomic nervous system damage caused by lupus. Both collapses happened at home.
But here's the best bit. I had " learnt to collapse at the sight of blood" ......I was a member of the team in a trauma unit and prior to that had worked in theatres and seen more blood than you could shake a stick at!! And no, no blood was present at any of my collapses.
Turns out I've had lupus all my life but it took a special kind of ignorance to suggest learning a fear of blood!
A Professorial Consultant! Fortunately I am now being treated appropriately.
Joking apart I was acutely unwell and in and out of hospital for 18months and unable to work for over a year. I was finally diagnosed when I bought my own notes and went through them myself and eventually got a referral to a very good rheumatologists. They diagnosed me straight away.
The NHS as a whole has pitiful knowledge about Lupus, unless you are a rheumatologist.
Very glad you’re getting good care now. Yes that’s why I think we need to help raise awareness. We are all fighting our individual battles for understanding but if we put them all together it might (hopefully!) improve things a little for the ones who come after us? Do you still work in the NHS?
No, the delay in diagnosis and treatment meant that by the time I was diagnosed we were playing catch up and too much damage was done. I had to be retired on grounds of ill health. I'm in my 30s.
If I had an earlier diagnosis then things may be different.
All mis diagnoses from GP surgery who refused to refer me to consultant as nothing showing in bloods. 3 yrs later one GP reluctantly referred me to rheumatologist when inflamation markets were raised. Excellent treatment since with rheumy, dermatologist and ophhalmologist. Firm diagnoses of behcets for last 5 yrs. GP diagnoses - impatigo, contact dermatitis, wet eczema, allergies, herpes, all in my head, and my firm favourite was when a GP asked me if I had ever considered that my symptoms were due to old age - I was 43 at the time!
Pleased you’ve had excellent treatment ever since but so many of us take so long of being told it’s nothing serious - old age at 43?!! My friend with MS was told it was just the menopause (in her 30s!)
I had early menopause at 40 and even this didn t raise any suspicions with GP, when combined with all my other symptoms. He said it was just one of those things!
'Malnutrition' because I am a vegetarian and, after a particularly bad flare, I lost 3 kgs over a 6 month period. Better still, that has now been changed to Anorexia Nervosa on my GP record!
My weight, on the whole, is very stable and my lung consultant has since apologised
Apologised verbally or wrote and got it taken off your records?? I think that’s my concern that we all build up these random wrong diagnosis that stay on our records even when they realise they were wrong - and treatment is then delayed next time as the next medic has to plow through all the red herrings?!
My first diagnosis with rhum stated as multi differential skin disease - lupus but would take 7 years for diagnosis?very weird. Then she thought fibromyalgia due to painful stiff joints! Recently diagnosed with sjogren's but dermatology thought Annular Erythema! They messed up a biopsy by not taking enough skin so now I have to have another in a few weeks. I seriously wonder if they know what they are doing or do they deliberately push back diagnosis for the stated 7 years? Sadly I doubt I am alone in my cynicism.
My wife has experienced some very good and exceptionally bad medical treatment in our path to get to a diagnosis of lupus which we achieved earlier this week.
The worst had to be a senior Consultant sat my wife and I down and then subjected us to 25 minutes of slow recital of all the tests my wife had done. Each one was concluded by a dismissive ' normal' and then he proceeded onto the next one. At the end of it my wife was nearly in tears and I was thinking of inventive ways of using his stethascope on him that would definitely be 'abnormal'. It was definitely done to humilate and dismiss and if this wasnt bad enough he then went onto to say I suggest to get your GP to increase the dose of anti depressants.
The hospital concerned is classed as the one of the worst in the country and this senior consultant was obviously there to demonstrate why.
That’s terrible Jimbo but sadly very common. Hopefully now she’s got a diagnosis things will improve hugely. I’d hope they wouldn’t intentionally dismiss and humiliate but so many of us have been in the same boat and felt exactly the same.
Nope neither. I have lung involvement with my RA. Luckily it is very mild and I have managed to keep it that way with lots of aerobic exercise, taking my med etc. I am a food scientist so have read tonnes.
The chap who concluded it was avian was a junior and I had to tell him he was incorrect and to check his notes.
Needless to say I was seen by the head of department after that!
Thanks for setting this up, Melba1 - I think it's a great idea for a study, and long overdue.
My contribution - well, my 'favourites' were the menopause (I wasn't menopausal) and stress. Also had MS and ME, which at least were closer to the mark. Turned out I have UCTD and dermatomyositis (plus I'm hypothyroid). It took 5 years to get a referral to a rheumatologist.
To be fair, I was quite stressed during this waiting time, but that was the immense effort of trying to hold my life together while being told it was all in my head. Even when I was diagnosed correctly it didn't stop - an occupational health GP suggested CBT to address chronic fatigue. For years, I'd used every trick in the book to keep going, so 're-framing' wasn't going to solve anything - what I needed was drugs, and lots of them. Just insulting, really.
Yes I think the stress of knowing something is badly wrong and it not being understood or acknowledged is hugely stressful in itself never mind the actual disease! I just stopped myself telling a friend recovering from cancer how lucky she was to have had a disease everyone understands, quick diagnosis and treatment and compassionate care and a good chance of a cure - none of which we have. I stopped myself because obviously cancer is truly awful too but I think lupus care needs to learn from cancer care.
I hope things have improved for you. I think your use of the word insulting is very interesting and accurate.
"Hysterical paralysis" when I could not move my right side, discovered 10 years later to be the result of migraines due to APS and lupus.
Unfortunately the hospital at the time, gave the impression that antidepressants and counselling would sort me out which influenced the treatment I received from my GP. So followed a diagnosis of the usual "stress and depression" caused by "having teenagers in the house", "planning my daughter's wedding" and most insultingly "empty nest syndrome" None of which was correct!! Suffered 10 years of different antidepressants, and suicidal feelings because I KNEW something was wrong.
The worst was when my gp said "I am 99.999% sure you do not have lupus" even when symptoms and blood ANA (taken by a locum) said otherwise.
Was finally diagnosed by another gp in a different surgery.
During this time I had asthma and a chest infection, SATS were 70 and falling. The A&E doc tried to take an arterial blood gas sample from inside my elbow where normal venous blood tests are taken. Naturally every time he pressed down with his needle trying to find the artery, he hit the nerves which were like electric shocks going up and down my arms. He tried 7 times with the right arm and 5 times with the left, heavily bruising both.
Each time I screamed, (well, with as much breath as I could!)
He gave it up as a bad job and blamed me for being needle phobic, (even though I have never had problems with needles and was a blood donor many times).
Even the sister shouted at me and told me I was making a fuss. Naturally that also went on the letter to my GP further endorsing the belief of attention seeking and anxiety.
I was admitted, given oxygen for 5 days and stayed in hospital for 7 days before my breathing became easier. They don't do that if there is nothing physically wrong, so much for the anxiety theory.
It was only later I realised the blood gas test should be taken at the wrist. The tingling in my fingers and not being able to grip anything went on for weeks.
I did not know at the time that I should have complained to PALS. At the very least it would have taught this doctor the difference between venous and arterial blood taking. I wonder how many other patients he practised on before getting it right.
My biggest mistake was accepting the doctors as experts and believing they knew what they were doing.
The beauty of forums like this and the information it provides means I am the expert of my own health and gives me confidence to query my treatment.
This makes me feel very sad you had to suffer this way. The more of these I read the more I realise we have to do something.
I had similar with blood gasses. The young doctor cut through my artery and then panicked at what the (admittedly very scary!) emergency admission consultant would say so he... ran away!! And left me pumping blood until someone else sorted it.
Yes becoming an expert is essential but don’t you wish sometimes when you’re really poorly that you could just feel safe, that the medics will understand the disease/ tests/ treatments?
I know the notes went to my new GP who asked why did I think I had lupus. I then pointed out the positive ANA, inflammation markers and the long list of symptoms, he looked at me, then said "but you don't have a facial rash".
My heart sank as I thought I had jumped from one non believer to another, but he read further, going back and forth over the cards, (this at a time when not all surgeries had computers) and said it was easy enough to repeat the blood tests and gave me a referral to a rheumatologist without even having the results.
I am forever greatful that he was open minded enough to believe me and happy enough to refer me to someone with more knowledge than him.
I waited ten very long and painful years for a diagnosis, I do wonder if and when my previous GP would have finally accepted I had something physically wrong with me.
I have been to a pain clinic recently and unhappily discovered that my sessions of counselling, and my supposed health anxiety and depression were on my notes and naturally that was the first thing talked about.
I was extremely relieved to find it did not influence the clinical psychologist present and he was very happy to discharge me to the physio after the one appointment.
I feel vindicated in one way but annoyed the comments are still there. I did think of asking for them to be corrected, but yes, I did have (unnecessary) counselling and yes, I was on various antidepressants for ten years. That is not in dispute but the reasons for them are. A more enlightened hospital and gp could have discovered the problem from the start with a bit more imagination and effort, but how do you convey that?
To get these comments removed or altered would involve the cooperation of my present and past gps, but I don't want to draw further attention to it in case I am again labelled with health anxiety, or cast as a potential troublemaker. I have a brilliant gp now and I don't want to risk it.
My diagnosis was such a relief, strange though that sounds, and it seems I am not alone when you read the other replies.
Oh bluebell, you are definitely not alone in these past diagnoses and I think we must have the only disease where so many of us are relieved to actually finally be told we have it because we knew all along something was wrong but started to even doubt ourselves?
So glad you have the right support now. I had something similar on my notes recently despite having had a clear diagnosis of lupus for over 6 years a hospital neurologist decided I didn’t have it because of no dsDNA and misdiagnosed. My GP just said ‘do you trust his diagnosis?’ I said no, he knew nothing about lupus’ and he said ‘that’s our answer then, just ignore it and we’ll all listen to the rheumatologist’ but I was fortunate enough to have a very good rheumy who quickly corrected the neurologist and gave me the right treatment. So many people don’t have that or have years like you did where they feel no one believes or is looking after them.
A fairly standard fare of anxiety and menopause. I am also going through the perimenopause, which seems to interact with the Lupus in a way the medics won't acknowledge but is there nonetheless.
Hard to know, since I don't know how long I've had Lupus (only diagnosed this year). It may have started 10 years ago, well prior to any perimenopausal symptoms (which in some respects are similar to Lupus anyway). All I know is it got much worse this year.
And....my periods changed with the medication. Less painful, less regular, less of a low mood, less bloating etc etc.
Projesterone has an immuno - suppressant quality. The level rises when pregnant so the bodies immune system doesn't attack the baby. Might be worth mentioning ? Its all very complex stuff ?
I did not know that Freckie1000 but now you've mentioned it, I looked up the medical evidence and they have done research on it. Fascinating. In order to stay pregnant 8 years ago, I had to take Progesterone suppositories. So maybe they modulated a high immune/inflammatory reaction to pregnancy (I'd had a miscarriage and years of not conceiving). And before then I did very well on the progesterone only pill.
Possibly related to that estrogen dominance thing in Lupus they talk about?? And that might relate to who it hits some people late on? Or why women are mostly affected.
This is interesting reading ,, I'm new to this page as I have been in the British Liver Trust page for just over a year. Quick run down , have been on Omezaprole for two years and last year was sent to get Endoscopy which found portal hypertensive gastropathy. One doctor told me I had to give up drinking straight away, so had a nervous wait on Fibroscan. Had to wait a while for results stating that no sign of liver damage. Was signed off by Dermatologist after two years after two lots of patch tests which found about 6 page's worth of thing's I'm alergic too. Despite this they haven't been able to stop the redness of my face nor the cuts and calluses on my fingers. Was talking to a friend of my wife who has lupus and has same thing going on with her face and hands. So I did what no one should and checked signs of Lupus on tinterweb. To be fair the Doctor I spoke to today has agreed that it will be good to get tested. Find out in a few weeks.
HI there, I had diagnosis of eczema with depression and anxiety. Then Fibro. Maybe only anxiety was for real, maybe for not getting the correct diagnosis. It took 5 years for correct one.
This idea for research and a scientific paper is fabulous!. So glad you've had a big response!. My Mis diagnosis is fibromyalgia!. You've probably had it a lot. Thank you for doing this. X
It's fantastic your also a patient who can relate to all this!. I'm sorry you had the Fibro diagnosis too!. Occurs a lot!. I've been reading a lot of the horror stories you've received!. Sadly this research is badly needed so thank you again for doing it keep us posted how you get on. It's really interesting. X
Ah well it will be teamwork and come from all our experiences so I’ll need to ask lots more questions and interview lots of you please!
What I worry about having read all these is that we’re actually the ‘lucky’ ones now. How many other people with lupus are currently stuck in that awful undiagnosed/ misdiagnosed time feeling hopeless and not getting the right help because they’ve been told they’re just stressed or fibro or health anxious or any of the many other random wrong ‘diagnoses’ I wonder how many never find out and the amount of mental suffering that must cause in addition to having the disease?
I was just about to be discharged from rheumatologist with a diagnosis of CFS, they had even sent the letter to the GP when they done an MRI, albeit the rheumatologist said you won't have this thing were looking for but for completion we'll do it. Two weeks later I had a grovelling phone call from the consultant at 8am telling me they'd found chronic sacroilitis, the main symptom in ankylosing spondylitis, which had been what they were looking for . I'm back tmw for more explanation, I'm still convinced there's something else going on as I'm increasingly feeling like death on a daily basis. I will be pushing for retest of all my bloods after this .
I bet there are lots of people wrongly diagnosed with ME/ CFS when it’s lupus or CTD. Glad you’re getting somewhere and keep pushing for answers even if your blood tests don’t show much. Many of us don’t have obvious blood tests. My rheumatology department says they treat the person and the symptoms and bloods are a very small part of it.
Good luck and hope the fatigue lessens, that really is the most depressing symptom for so many of us
I never know whether we should officially raise these mistakes/ cover ups to help future people or just let it go for our own sanity? I’m hoping if we can get our combined stories published in a medical journal we can raise this awareness.
Hello I have been having symptoms for 12 years,over this time my wonderful GP who always believed and listened to me referred me 3 times to rheumatologists I have very extensive family history of autoimmune diseases affecting most of my female relatives including my mother who had severe rheumatoid arthritis.The first rheumatologist diagnosed antiphospholid syndrome only treatment aspirin nothing to address pain muscle aches and fatigue around 4 years later went back, sent away with fibromyalgia diagnosed despite no tender points in fact that test wasn't performed.I never agreed with this diagnosis, I then stayed away for years getting worse not wanting to be dismissed again but when symptoms became unbearable went back diagnosed with gout it wasn't. As despite treatment for gout symptoms remained saw this rheumatologist every 6 months for over two years and they were good listened and helpful but a diagnosis and treatment remained elusive.The consultant then asked a colleagues opinion, diagnosis still not certain but finally more testing showed a definite autoimmune issue which is being treated.It had been a very long difficult road.I have now found a doctor willing to investigate order tests and listen, and I know I am an unusual case but in general this delay with diagnosis seems to happen a lot in autoimmune diseases I appreciate they can be complex and the drugs to treat are strong but not being diagnosed leads to not being treated and patients suffer in limbo,in pain with symptoms fatigue and in my case taking a lot of antiinflammatories which has risks of its own.I hope collecting this information leads to improvements being made for patients.I do feel I have been fortunate to have finally found doctors who are trying to help and I am sure most doctors try their best but I just wish it hadn't taken such a long time.
That’s great you have a wonderful GP and are finally getting closer to diagnosis but what a long time for you to get there. I think your sentence ‘I then stayed away for years, not wanting to be dismissed again’ is very important as this happens to a lot of people. Hopefully by raising awareness of the impact on our physical and mental health things might change. It will still be a difficult disease to diagnose but treating all those undergoing the diagnostic process (and subsequent visits with the diverse, changing symptoms) with belief and compassion would improve our lives hugely.
Good luck with finding the answer to what is causing your symptoms
Saw a neurologist who basically saod it was all in my head caused by a trauma i must have had as a child. I explained i had no trauma and he basically said i must be in denial as everyone has trauma and stress and i was either too emotional or held all my emotions in. I was confused as i thought i went to see a neurologist about weakness in arms and legs not a psychologist. I battled for 10 years before finally getting a diagnosis.....mainly i was told i had M.E
So sorry it took so long. I think many of us have had similar experiences with neurologists dismissing our symptoms. I wonder how many people misdiagnosed as ME actually have an autoimmune disease and aren’t getting any treatment?
Did your weakness in arms and legs improve with treatment? I went to see a neurologist recently and after being dismissed with several misdiagnoses (despite 2 rheumatologists saying it was the lupus attacking my nervous system) the neurologists finally agreed it was neuro lupus but that my weak leg must be a ‘functional’ issue. The rheumys say this weakness is part of lupus in the nervous system and also think the neurologists don’t understand how severe the fatigue we get is.
Really hope you’ve got great help now and have improved.
Hello I was hospitalised last year as I had stiff joints and extremely painful muscles. Couldn’t walk or move my neck. They tried to diagnose me with Ghonarrhea and tried to tell me that my boyfriend was cheating on me. They sat with me as a cried my eyes out and they tried to devise a story to tell my parents as they were unaware that I was active. The cheek! HOWEVER turns out that it wasn’t ghonnerrea like they said (before doing a STI test) it was meningitis! I was actually relieved when they told me. Then I realised minutes later that it was still bad news! 😂😂😂😂😂 im all good now though! (Please make anonymous!)
Asthm at first but no asthma worst jyst antihistamine in real big dose, one told me i have long covid without having covid, trigeminal problem second, myasthenie, fnd of course (blue leg and can''t walk), ophtalmo laugh at me told me my partial lost of vision add to adjust glasses and the black spot in my eye nobody can see it so live with it. At least the vision return to normal. Recently jersey finger and a gachette finger. And it's normal to have urticaria to 15min of exposure to sun to just put sunscreen. All of this start the day of the vaccin so all the doctor laught at me because everywhere they say it's impossible. And the new thing since covid....the stress is there favorite choice of reason why we are sick.
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