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According to a report released by the Johns Hopkins Armstrong Institute Center for Diagnostic Excellence, an estimated 371,000 patients die, and 424,000 are permanently disabled each year because they are incorrectly diagnosed across a range of care settings.
Overall, the paper suggests medical providers misdiagnose diseases roughly 11% of the time. However, it's important to highlight that different conditions are missed at different rates. For example, only 1.5% of heart attacks are misdiagnosed, but spinal abscesses are wrongly identified 62% of the time.
To hear from the people themselves, TikToker @mrsedwardsplusafew asked her followers who have gone through something similar to share their experiences. Continue scrolling to read about them and don't miss the conversation we had with Dr. Iris Gorfinkel!
Image credits: mrsedwardsplusafew
This post may include affiliate links.
#1
My mum took my older brother to the doctor and instead of looking at him he diagnosed her with ‘mother’s paranoia’. It was in fact neuroblastoma cancer and I’m now the oldest sibling
It's easy to blame the specialists in these cases, and while they can definitely be at fault, it's important to understand that doctors, nurses, and the rest of the staff are but a chain in a much larger system that is healthcare.
Iris Gorfinkel, M.D. is a general practitioner, medical researcher, and the founder of PrimeHealth Family Practice and Clinical Research in Toronto, Ontario.
She told Bored Panda, "Misdiagnosing starts with patients being interrupted by their doctors within 18 seconds. That's on average. Mistakes happen because we're so often rushed and take shortcuts.
"Some of those shortcuts happen based on how frequently we see a problem in clinical practice. For example, if someone comes in and they say, 'It burns when I urinate.' Yes, it could be a urinary tract infection, but it could also be a sexually transmitted infection like chlamydia or gonorrhea, and that needs a separate test, not just a urine culture," Gorfinkel explained.
"So, landing on a diagnosis after the first symptom we hear, and not listening to the whole story, is risky."
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#2
Got told last week that I have Feminine Hysteria. Apparently we’re living in 1925, not 2025
#3
My beautiful 14 year old daughter, Phoebe, was diagnosed with migraine in A&E on 7th Feb 25, discharged still in pain and died in our car 1/2 hour later 💔 She had a brain tumour
Another big problem, which Gorfinkel believes is also accelerated by AI, is that doctors aren't personally connecting enough with their patients.
"Medicine isn't just a pill. It's very much the person who's providing it. It's that interaction," she highlighted.
"I think the bottom line is patients shouldn't be afraid to ask more questions, to get more answers, even if it means challenging their doctor. And if that doctor should act angry or defensively, that by itself needs to be addressed."
#4
I took my 1 day old to A&E and I was told I was a overprotective new mum, and my daughters "movements" were normal reflexes for a newborn. turns out she was having multiple seizures every few seconds and had brain damage from lack of oxygen at birth. I refused to leave, until someone took me seriously though!
#5
diagnosed with being FAT when I was dislocating my knee in constant pain, turns out I had Ehlers danlos syndrome
Howl's sleeping castle 2 weeks ago (edited)
My MIL's doctor kept telling her that her back pain is because of weight for 2 years. Every time the only advice she received was to loose weight. One night the pain became unbearable so we took her to emergency. Turned out to be breast cancer which had spread all over and had even fractured the spine at 3 places. All the kids were so angry they wanted to vandalise the doctor's clinic. The elders had to talk them out of it.
Since the problems are so multifaceted, the potential solution list is also very nuanced. "One thing that would help is making sure that we're communicating with the healthcare workers on the team," Gorfinkel said.
"Whether it's a specialist or a physiotherapist, we just want to make sure that their understanding and our understanding [of a particular case] match.
"Open charting for patients is one of the ways that makes a difference. It allows patients to see their records, follow them, and be proactive in their care."
This practice engages us, and we care more as a result.
#6
DIPG brain tumour & a stroke = attention seeking 7 year old child
Alexia 2 weeks ago
This one is tragic. I know a case of a 8 y.o. girl who had very low appetite and low energy. "She's just spoiled" the doctor said. As the mother insisted to convince her to eat, the girl replied: "Mommy, you don't understand me..." She was later diagnosed with brain tumor (glioblastoma).
Another thing worth mentioning is that difficult, uncommon diagnoses are often delayed (for a variety of reasons). Because of this, Gorfinkel believes that it's important for clinicians to adapt and slow down their thinking as well.
"If the pieces of the puzzle don't fit, patients shouldn't be afraid to say, 'Wait a second, what about this symptom that doesn't quite fit the picture?' As I mentioned, having the sense that you've been heard by itself is important medicine.
"Yes, it's being threatened by AI, but it certainly hasn't been lost."
#8
My dad suffered a head injury and then constant headaches for 6 weeks. He went to the gp 5 times in them 6 weeks. The gp told him he was suffering from miagraine or concussion. My dad infact had a blood clot the size of a tomato on the left side of his brain. Was only rushed to hospital on blue lights when he stopped walking and talking. Very traumatic very distressing still not over it
Huddo's sister 2 weeks ago (edited)
My mum had a serious migraine for a few days and went to the hospital where she was told there was nothing unusual and sent her home. Later found out it was a TIA (minor stroke).
#9
34 weeks pregnant vomiting blood hospital said 4 times it’s normal and blood is from vomiting so much. Appendix burst had 1 hour to operate before me and the baby died🙃 tried to sue
Rachel Pelz 2 weeks ago
What is the emoji suposed to mean? I'd think "crazily funny" but obviously "very sad"?
We, the patients, mustn't forget that we also bear responsibility and need to actively participate in our treatment.
"When things do not work out after you've been given a medicine, a therapy, or advice, be sure to follow up," Gorfinkel said. "If there's a feeling that you just aren't better, or if there are unanswered questions, asking them is really important.
"People with family doctors actually live longer because they have one conductor who sees the big picture instead of multiple specialists trying to [glue together the pieces]," she added.
#10
"it's just a period" "it's normal to bleed after delivery" "it's just a bit of cramping" - my placenta was left in
Yayheterogeneity 2 weeks ago
No, that would be so neglectful I cannot believe that. It's standard procedure and belongs to the birthing process. They could not have missed that...
#11
Referred to gynae for severe tummy pain, told me there was nothing wrong I was just fat. Turned out to be an ovarian cyst that was 13cm in diameter and was squishing all my other organs
Margaret H 2 weeks ago
They told me my ovarian cyst (the size of a football) was constipation.
Gorfinkel acknowledges that doctors' attitude also plays a role in these cases. "I think misdiagnosis frequently comes from overconfidence, and there's nothing more humbling than the practice of medicine," she said. "The best doctors know that and aren't afraid of eating humble pie when it's served."
This means that we want doctors to be experienced, but at the same time, we should respect those who can admit when they're not certain or when they lack experience in treating a certain problem. "These are physicians who keep overconfidence in check and know that hubris is the bedfellow of misdiagnosis," Gorfinkel explained.
#12
Diagnosed with extreme morning sickness in pregnancy as a lesbian on the pill with multiple negative test results
#13
Told by male docs for a year that my nonstop period was Menapause and I "just have to get used to it". Was eventually diagnosed by female doc as stage 2 Uterine Cancer. Radical Hysterectomy required
whodunnitfan2013 2 weeks ago
When I was 15, my GYN at the time refused to test for endometriosis, in order to preserve my fertility. By the time I found a doc who actually cared, my endometriosis was so bad, I had to have a hysterectomy at 19. Task failed successfully.
The 2024 Ipsos Global Trustworthiness Index revealed that doctors and scientists are considered the world's most trustworthy professions.
Across 28 countries from around the world that took part, doctors came in first with an average of 58% of the global population claiming they have full confidence in them.
It's unreasonable to expect that the 11% that we mentioned in the intro can be brought down to 0. But that doesn't mean we can't try.
#14
"it's normal to gain 5 stone in 6 months" then told me to stop eating crisps.... it was a tumor
#15
“You just have covid” - my body was in fact shutting down from severe preeclampsia and HELLP syndrome where me and UNborn baby were told we have 12 hours to live…MAX
#16
My mum when to a private neurologist who told her nothing was wrong with her and disregarded her symptoms.. turns out she has a brain tumour amongst other issues.. he apologised and refunded her
#17
my grandad went to the doctors as he was slurring his words/ couldn't walk properly just very ill they told him ' oh it's just your diabetes get your blood sugar up' 2 days later and he ended up spending 6 months in hospital over having an abcess infection on his spine and has to get a bit of bone near his neck taken out and almost died , the hospital also tried discharging him after a week being there as they thought he was just dehydrated , luckily we refused to take him home and then they properly did tests and everything
SkyyCaramba 2 weeks ago
as someone who occasionally gets low blood sugar, I can tell the difference between low blood sugar and something worse. the doctors need to do better.
#18
About 17 years ago my gran found lumps, doctor told her it was shingles, after a few months of being in utter agony they realised she had bone cancer and that it was eating away her rib cage and spine, she had radiation to try and reduce the tumours. She passed away around 6 months later
#19
I kept collapsing, the doctors said it was anemia. Collapsed at work and was rushed into hospital. I HAVE A HEART CONDITION AND COULDVE DIED
#20
Had a really bad kidney stone. I was [urinating] blood as dark as black ink. The doctor told me it was just blood from my periods
Royal Stray 2 weeks ago
Even if that had been period blood something would have been seriously wrong
#21
I was misdiagnosed with arthritis, and then fibromyalgia. I have ehlers danlos syndrome. They just assumed joint pain meant arthritis
Ahnjunwan 2 weeks ago
To be fair, EDS is not very common and arthritis is far mor likely. Also, the skin is not allways hyperelastic, type 6 for example has skin that looks somewhat wobbly but otherwise normal. Fibromyalgia is sadly often a diagnosis people get when doctors do not find something else.
#22
my intracranial pressure was so high i woke up blind in one eye…went to the hospital and they said it was ANXIETY and sent me home…ended up having brain surgery 3 months later
#23
bacterial meningitis as just a headache
Nadine Debard 2 weeks ago
But it's not "any headache", it's quite specific. When I have a strange headache the doctor checks my neck each time. And I have migraine, so they could dismiss the headache easily.
#24
told i was having anxiety attacks in a&e and to leave me be… 2 hours later i was intubated in icu and diagnosed with epilepsy
Royal Stray 2 weeks ago
What makes this even worse is that anxiety attack isn't even a medical term. So the doctor/ nurse clearly just wanted to get rid of you
#25
my daughter had chicken pox and was unable to walk, talk, or wee and had a temp of 40. she lost all feeling from waist down. I took her to a&e 3 times. was told it was flu
Charl Marx 2 weeks ago
My daughter had a severe case of chickenpox as an almost 2 year old. She was in hospital for 6 days with IV antibiotics, pain killers and fluids. She had horrible febrile convulsions too, and her eyes just kind of sank into her face. I'm still mentally scarred from it despite her being a healthy 8yo now. I vowed if I ever had more children I would pay for a vaccine privately rather than risk going through that again.
#26
The gynaecologist told my mum I was in labour when I twisted my ovary
Huddo's sister 2 weeks ago
What? Just because they were screaming in pain? When my ovary was twisted I thought to start with that it was period pain (though I never get it bad) but then it ramped up quickly. I was crying out in pain and my dad called an ambulance, thank goodness. I have never given birth but I would think it's fairly comparable, though it didn't come in waves as much as I think contractions would be. At the hospital, after I said I couldn't be pregnant, they took scans to rule out appendicitis and kidney stones really quickly and then decided it must be an ovarian cyst and torsion. That was good because it meant I got surgery quickly enough the ovary was saved.
#27
Daughter was 7 and was constantly passing urine, drinking & sleeping. 1st, 2nd & 3rd doc said viral and I was paranoid . By 4th visit she was blue lighted to hospital & diagnosed with type 1 diabetes
Na Schi 2 weeks ago (edited)
Sorry, but me as a none professional would have guessed it being type 1 diabetes. As it sounded eerily similar to the symptoms several of my friends who got it had shown before they got treatment (and their doctors pretty quickly got to that diagnosis). (Edit: I would have been more surprised if the doc in the OP's post thought it was type 1 but it would have been something completely different).
#28
Diagnosed with growing pains until I was 20…. It was actually Ehlers Danlos
Grudge-holding Treefrog 2 weeks ago
Same boat. I’m fighting for my diagnosis right now. I’m a minor, so I can’t do much since my mom doesn’t think it’s anything, but my doctor agrees it’s probably hEDS.
#29
One of my best friends was literally dying in front of us. She was told by nurses she should get her act together, cause her daughter needed her. She couldn't keep food or drinks down
Howl's sleeping castle 2 weeks ago (edited)
I was in hospital for extreme stomach and chest pain. I was crying. They wanted to take me for tests but it was unbearable for me to get up. They tried to make me stand and I screamed out. One nurse told the other 'look at this drama'
#30
Was diagnosed in 2008 with depression and anxiety, but I didn't find that out until 2023. In 2008 I had filled out a form and been told, "have you ever tried not to think like that?" and left ashamed
Nads 2 weeks ago
How can someone be diagnosed with someone and not know about it?? 😱 Can doctors just write things about you that follow you for the rest of your life??? This is horrendous! Like, now I don’t disclose to doctors I have depression anymore. It always made them instantly dismiss what I had just said. Well, tbh, now I avoid doctors the best I can. Am I dy1ng? No need to take me to the hospital, I rather d1e at home.
#31
"it's just an ear infection" no actually it was a cholesteatoma that eroded 2/3 of my hearing bones & was eroding my mastoid/facial bones & that's why i couldn't hear out of my left ear for 6 years
Geoffrey Scott 2 weeks ago
Not sure about now, but in the early-mid nineties 'drainage tubes' were all the rage. Daughter was referred to an ENT. He did a TOO quick exam and said, "yup.. she needs tubes". Red flags flying we said, "We may want a second opinion".."Get a third or fourth, it's your money". She got some relief from a chiropractor who showed my wife how to externally massage the Eustachian tubes to allow better drainage. At 18, she had surgery to implant titanium stapes, as her were fixed(did not vibrate).
#32
Migraines - turns out my brain was being squashed by excess fluid and also starting to fall out of my skull
BookFanatic 2 weeks ago
Weird. I had a similar discussion with my doc and he finally figured out I have Chiari Malformation. Part of my brain's slipped down and is pressing on my spinal cord. It's mild enough to not usually bother me.
#33
“Nothing wrong with my gynecologically” while spending 6 months with the most severe, unbearable, completely debilitating pelvic pain (I had just had Endo excision surgery and the 6 months post-op was CONSTANT looking for answers). Was about to go septic when I was finally admitted for a bladder infection; and uterine infection, both that likely had since my surgery. I almost died despite going to the ER and my private doctors probably 80 times in 6 months.
#34
I went to a&e for really bad hip pain took X-rays etc was told it was pulled muscle ! It was bone cancer and what they were looking at was my bone being eaten ! It’s not curable
#35
For 10 years my dad was told he had severe constipation now he’s dead. He had cancer
Little Bit 2 weeks ago
My father in law was having trouble digesting his food. Everything he ate gave him stomach pain. He was repeatedly fobbed off by his doctor who said it was "just indigestion". My father in law said in all his 81 years he had never been prone to indigestion. Eventually it got to the point where he couldn't eat anything at all and was admitted to hospital where they discovered he had stomach cancer. He passed away within a month of diagnosis.
#36
had a crushed spinal cord. apparently the pain and inability to walk was anxiety
#37
A mass in my stomach and intestine that had put many holes in my intestines and executive liver disfunction being diagnosed as constipation
#38
‘It’s just an ear infection it’ll clear up’ it was meningitis.
Huddo's sister 2 weeks ago
I could understand a high temp indicating an ear infection while it's actually meningitis but there would have to be fluid in the ears too.
#39
Was told I was just a paranoid mum because my daughter would sweat like crazy, she had a super rare heart disorder that would of k*lled her left untreated she's just had open heart sugary xx
#41
seizures misdiagnosed as panic attacks
N.C. O'Brien 2 weeks ago
I wasn’t sure if I was having panic attack or heart attack & was too embarrassed to go to A and E. Rang GP to see if I could get it checked out there. Receptionist was instructed to tell me go to the hospital . Turned out during acupuncture a needle had punctured my left lung and had a complete pneumothorax & rushed straight into recus for a chest drain. If you ever feel embarrassed going to hospital get a second opinion from someone you trust. Also if your lung has collapsed stop yourself from engaging in conversation when a doctor asks you to. I learned that the hard way. It is not rude to do so in this instance. It causes you to deteriorate quicker if you don’t have the extreme pain that some people get. Once I stabilised & off oxygen I rang them back to thank them for getting me to go to hospital. Unfortunately I am susceptible to it happening again that a cold could actually trigger it. Now I just have to get over embarrassment attending for that
#42
‘ a bad UTI’ - 15cm tumor on my ovary pressing into my bladder
Huddo's sister 2 weeks ago
That should be checked pretty quickly and easily, If a UTI is suspected a urine test is done and results come in a few days. Once that is ruled out other tests should be ordered straight away.
#43
Told I had a gluten allergy which was actually endometriosis
Huddo's sister 2 weeks ago
Again, this should be easy to check. You can even get a blood test now for coeliacs, but a colonoscopy would also rule it out quickly.
#44
told me it was anxiety and vitamin deficiency causing my paralysed legs. turns out I have a neurological disorder
Huddo's sister 2 weeks ago
Do doctors not do blood tests to check vitamin levels when they suspect that? My GP does.
#45
My sister was told for 5+ years she had depression. It was a brain tumor.
#46
Needed tooth pulled- turned out it wasn’t a tooth issue- was Trigeminal Neuralgia- so missing a back tooth for nothing
Nils Skirnir 2 weeks ago
In this case, they can be related. And there is no test for TGN. And the pain often feels like a toothache.
#47
FIBROMYALGIA!!! Because that’s what they diagnose you when they don’t know what on earth is going on with you.
Forrest Grump 2 weeks ago (edited)
The word "fibromyalgia" just means "fiber pain". With that diagnosis, you are being told that the reason you are suffering pain is because you are suffering pain. It sounds better than "I don't know what is causing your health issues."
What do you think ?
Nils Skirnir 2 weeks ago
It’s amazing how many of these could be diagnosed with basic blood tests or a 15 minute CT scan-even an X-ray.
Royal Stray 2 weeks ago
You'd be surprised how often doctors just can't be bothered. I had a good-ish one last time I went that did order blood tests, but it's absolutely not the norm.
Load More Replies...
Nicola Roberts 2 weeks ago
I googled it, as I thought the same. Ehlers-Danlos syndromes (EDS) are a group of inherited disorders affecting the body's connective tissues, which are essential for supporting organs and holding body parts together. They are characterized by loose, unstable joints, stretchy, fragile skin, and other related symptoms, potentially impacting multiple systems in the body. There are 13 types of EDS, and the severity of symptoms can vary widely
Load More Replies... DaisyBee 2 weeks ago (edited)
Told my sciatic pain was due to my weight cause there was no other reason why I, as a teenager, should have sciatic pain. Stage 3 Endo & PCOS suggest otherwise, doc! The endo in particular was causing the sciatic pain & inflammation, mimicking sciatica
Nils Skirnir 2 weeks ago
My SO suffered from Endo for many years and often went to the doctors with pain. She was given pain killers, but little was done until she went to a female gynecologist. Tip for women is if they’re not happy with their doctor, go to a female one. Endo is grossly underdiagnosed and untreated
Load More Replies... Nils Skirnir 2 weeks ago
It’s amazing how many of these could be diagnosed with basic blood tests or a 15 minute CT scan-even an X-ray.
Royal Stray 2 weeks ago
You'd be surprised how often doctors just can't be bothered. I had a good-ish one last time I went that did order blood tests, but it's absolutely not the norm.
Load More Replies... Nicola Roberts 2 weeks ago
I googled it, as I thought the same. Ehlers-Danlos syndromes (EDS) are a group of inherited disorders affecting the body's connective tissues, which are essential for supporting organs and holding body parts together. They are characterized by loose, unstable joints, stretchy, fragile skin, and other related symptoms, potentially impacting multiple systems in the body. There are 13 types of EDS, and the severity of symptoms can vary widely
Load More Replies... DaisyBee 2 weeks ago (edited)
Told my sciatic pain was due to my weight cause there was no other reason why I, as a teenager, should have sciatic pain. Stage 3 Endo & PCOS suggest otherwise, doc! The endo in particular was causing the sciatic pain & inflammation, mimicking sciatica
Nils Skirnir 2 weeks ago
My SO suffered from Endo for many years and often went to the doctors with pain. She was given pain killers, but little was done until she went to a female gynecologist. Tip for women is if they’re not happy with their doctor, go to a female one. Endo is grossly underdiagnosed and untreated
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