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!
#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 ofPrimeHealth Family Practice and Clinical Research in Toronto, Ontario.
She toldWe, “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.”
#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
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
#7
Just ibs. Normal for women. Stop complaining. Stage 3 colon cancer.
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
#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
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
#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
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
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
#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
#21
I was misdiagnosed with arthritis, and then fibromyalgia. I have ehlers danlos syndrome. They just assumed joint pain meant arthritis
#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
#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
#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
#26
The gynaecologist told my mum I was in labour when I twisted my ovary
#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
#28
Diagnosed with growing pains until I was 20…. It was actually Ehlers Danlos
#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
#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
#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
#32
Migraines – turns out my brain was being squashed by excess fluid and also starting to fall out of my skull
#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
#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.
#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
#40
Being a hormonal woman. I’ve got borderline personality disorder…
#41
seizures misdiagnosed as panic attacks
#42
‘ a bad UTI’ – 15cm tumor on my ovary pressing into my bladder
#43
Told I had a gluten allergy which was actually endometriosis
#44
told me it was anxiety and vitamin deficiency causing my paralysed legs. turns out I have a neurological disorder
#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
#47
FIBROMYALGIA!!! Because that’s what they diagnose you when they don’t know what on earth is going on with you.