Hi guys!
I am a college student & I have chosen to do the topic of heart disease misdiagnosis for my research project.
Does anyone have any information &/or personal experiences about if you have been misdiagnosed with another illness & it has turned out to be heart disease?
Thank you!
Hello i had a consultation with a cardiologists as gp found irregular heartbeat and wanted it checked out. Took 4 ecgs and they were inconclusive so he dischadged me. 4 months later had a heart attack with 3 stents fitted! Heart disease runs in family. Not sure if i fit the criteria you are looking for but happy to assist should you need be.
I was told because an normal angiogram of my coronary arteries were clear that I couldn't possibly be having cardiac chest pain.
I had a specialised angiogram which showed all my coronary blood vessels large and small go in spasm causing a lack of blood to my heart. Coronary vasospastic angina.
I cannot be fixed by stents or surgery only medication to try and reduce my spasms and pain.
I live like many others with this condition that so few Cardiologists, Cardiac nurses GPs and other heart patients have any understanding or knowledge about.
Many mistakenly believe you have to have Coronary heart disease to have a heart attack or unstable angina.
Non obstructed Coronary artery disease is a big problem caused by little blood vessels not functioning as they should.
hi .do these spasms cause infarcts .are they classed as mis.i have to ask because im nto confident in my recent diagnosis of ha
Hi I am a bit of a research geek
journals.sagepub.com/doi/10...
It is thought that maybe about 10% of Heart attacks are due to Myocardial infarction non obstructive coronary arteries MINOCA.
Microvascular angina in general might be a good area to cover. It's not so much a problem of being misdiagnosed as something else but being told it's not a heart issue at all. This is because a patient can have perfectly clear main arteries show up on the angiogram but what is missed is malfunction of the smaller blood vessels which don't show up on the pictures.
Luckily I was correctly diagnosed straightaway as my tests were carried out at my local hospital which fortunately happens to be Harefield heart hospital. But there are a lot of folk who struggle to get a correct diagnosis.
hello was diagnosed with AF. Also slow HB Always had slow HB down to 42 BPM no problems health wise at all. But told heart was in dangerous condition could stop any minute. Despite having 24 hour heart monitor rate between 47 BPM 139 BPM 6 months ago. No problem at that time. doctor said good range. Regularly trained in gym HB up to 140 with quick recovery.No pain no breathlessness felt great. Hard walks in Cheviot hills recently. No problem. Two days after diagnosis fitted with 3 lead pacemaker. (By ventricular) On all sorts of pills.They said heartbeat to slow for my age I am 74 always felt young and enthusiastic. mixed with young and old. Now do not know whats what Undermined all that I am or have done. Yours chain mail
Yes I am similar to Milkfairy and Dunestar above and am in the process of being tested for CAD PA etc after being told I had likely been misdiagnosed for years if not decades.
Hello, You have certainly picked an interesting topic for research. I became ill with pericarditis some years ago and the hospital just said it was bacterial causes. I sort of recovered but gradually I became more breathless and lacking in energy over the last three or four years. One GP suggested I just was not fit -how true but not because I was a couch potato! She is off my christmas card list. The senior GP found after bllod tests I had a problem with the liver and enzyme readings were very inconsistent but indicating to him maybe that if I avoided any alcohol for three months we could review the matter. As a very moderate drinker it was easy to avoid for this time but strangely my gamma reading was back to normal. This did not solve the problem and then I had an episode of double vision and intense headache in the right side of my head. The thought was it might have been a TI and a specialist who was a real box ticker felt my blood pressure was too high, it had been taken by a nurse on a hot sumer day after a race down hospital corridors and up several flights of stairs to get to his clinic on time! Why do they locate a stroke specialist in such an awful location?? He sent me for an mri scan of my head and neck to see if there were any constricions -there were none! Back to the GP who was scratching his head. I went on a cruise the following spring and suddenly developed ascites and my whole abdomen was completely bloated, the ships medical team drained of 2 litres but I was hospitalised in Lanazarote where they drained a further 8 litres that day. Various blood tests and x rays such the consultant suggested probably much alcohol on the ship, so unfair having passed through a stormy bay of Biscay alcohol was not on the agenda! He felt I had a serious liver problem and should get immediate treatment back home. I phoned my GP and he could not believe it but I went to see a consultant and had a biopsy, scan and other tests which showed I had scarring on the liver suggesting cirrhosis plus my pancreas was inflamed -quite worrying but she pinpointed alcohol was not the issue. She felt pressure on the portal vein was high. So off to a london hospital for arterial tests which indicated I had the arteries of a teenager, if only as I was by now 70yrs old! My condition worsened and my heart started to become suspect although ECG had not indicated too much amiss. So I was getting desperate as I had by now developed serious fluid build up in my right lung and diuretics prescribed. Every winter I got pneumonia and the fear expressed was possibly cancer or asbestosis! So I was packed off to Guys hospital and had tests and an op to glue the pleura to the rib cage; no sinister findings but the bottom 25% of the lung was removed as hopelessly damaged by the fluid build up! Then the fluid started to appear in my left lung!! Finally I was so fed up with all the different gurus that I managed to get a private consult with a physician who went through everything including my background in work and travel. He introduced me to a colleague who had trained at the Brompton in London - I had MRI scans and more tests and he said he only had come across one other case and that I had probably picked up a parasite on my extensive travels in the middle east that had caused my pericardium to gradually harden and restrict my heart - at last a name -Constrictive Pericarditis- he managed to get me up to the Brompton for a very specialised MRI and echo cardiogram. The team there were great and confirmed his thoughts and I was put on a waiting list for a pericardiectomy. Fate intervened in that I developed AF and was rushed in as an emergency, had the procedure and am well on the road to recovery. In fairness this is pretty rare stuff in the Western World, The several years of is it this , is it that? were horrendous and various specialists did not spot it although the medical web sites are pretty easy to find that mention it when you punch in the symptoms which confirms my view the NHS still has a tick box mentality. Hope this brief tale helps.
That is quite a story!!!
Medicine is the skilful art of listening well and applying the science with compassion and kindness .
Rather than ticking the boxes or treating patients as an episode of care or treatment to be charged by the provider hospital to the commissioner CCG.
I have to strongly agree with your comments, all throughout the medical fraternity a sense of empathy is, by far, the most appreciated by users of the service. Seems to be more of a business decision than a medical one at times leaving some users feeling like time wasters and moaners rather than the most experienced person in the world about changes in their own bodies.
Hi EmTheSloth
Good choice for a project, I wish you all the success in the world with it.
Does 'no investigation' therefore 'no diagnosis' count for your project?
My problem wasn't detected at an early stage and I ended up just missing a heart attack, I reckon. (age 71; had a 40 year largely sedentary job)
I've just been fitted with 2 stents after having an angiogram which showed diseased arteries. One artery 99% blocked - small stent needed. Another artery 50-75% blocked over a long length - 48mm stent fitted. The evidence was clear when they investigated; its those final 3 words that are the reason why I am responding.
But first some background; there is a family history of heart disease and stroke on my father's side in particular. Also, I'm more under-weight than overweight. No sign of fat on me. I don't eat fast food, never have done; rarely ate a pudding; but I love both butter and meat and have eaten both in significant quantities, on the meat bit, particularly beef and bacon. Bacon and eggs etc would often be my choice at lunch. I have always eaten lots of veg, but not a lot of fruit. Home cooked food rather than ready meals were also eaten. I used to drink; I didn't think excessively. I stopped about 6 months ago.
With my genetic background, I didn't know what I was doing and no-one told me, nor did anyone think to ask. I blame myself for what has happened as the advice was there, I didn't pick up on it; but so were symptoms but I wasn't asked the questions that would have triggered a response from me that would have yielded a diagnosis at an earlier stage.
I had a heart arrythmia invesigated a few times over the last 20 years. One consultant got a BP reading at 200+ on one hospital visit (about 4 years ago I think). The symptoms declined and so I went home, discharged. I seem to remember that my blood pressure went back to around 150. Diastolic figure, I'm afraid I don't remember with clarity, elevated for certain but I don't think it was much above 90.
It's only recently (earlier this year) that I ever considered angina as a possibility. I knew nothing about it and the variety of ways in which angina makes itself known; ie what the range of sympotoms might be. I thought it was just chest pains, I'd never been told anything else, so no chest pain=no angina=no problem with heart. How wrong I was.
The point is I was never asked if I had any other symptoms that I now know might indicate angina; in particular, back pain between the shoulders and jaw/neck ache. I've had both for ages on a very irregular basis and thought it was muscular, bad posture whilst sitting at my work desk. So it was only when a front of chest pain increased in frequency AND their being no other obvious cause like a cold, together with breathlessness, on a short almost flat walk that I started to wonder. Went to the doctor and he diagnosed angina.
You need more information: Over the years, from around 2000, my cholesterol readings were always above 5, some above 6. Blood pressure always above 140 and higher; concern - most certainly expressed, but no real investigation or discussion.
So, I blame myself, my bad diet (I didn't think it was that bad as I'd only ever been in a Macdonalds once back in the 1970s) and thinking that it cannot happen to me type attitude. However, I now realise that I had been having angina pains for years without realising it - hence this rather lengthy post, sorry - which might have triggered far earlier all the changes I am now making.
I just didn't know enough to tell the doctor of the important symptoms that would have got to the answer quicker and earlier.
If I may add, more as an after thought:
Information is vital, but.... would I have taken notice of it, if I read a leaflet or a web page? Probably not. The reason is that I suspect I wouldn't have thought it applied to me, because I don't eat fast food, nor am I overweight. Now, I am meeting others who have exercised and are of slim build who have been surprised to find heart disease affecting them too. So what are the pressure points and psychological triggers that would have got me to behave differently? I just don't know, but having watched my grandchildren grow, the answer is with the very young I suspect. By the time they are 5, its probably too late. Hence, educate the young Mums and playgroup leaders may be an approach worth investigating.
Good luck and thanks for reading this, hope it helps.
I was diagnosed as "just depressed".
I had Vascular Cognitive Impairment, so I thought I might have a neurological problem... so I told the doctor I thought I had "something wrong in my head"; and they referred me to a (private) psychiatrist, who told me I was "just depressed". (When she chased up the invoice, and suggested that I should pay, I told her that I had had an NHS diagnosis, and I was booked in for treatment, and I would have been willing to discuss her invoice in court, or with the GMC!)
One Doctor discussed anti-depressants... I changed my doctor, and the next just wrote out a prescription for anti-depressants and said: "take these". I took the prescription to the local pharmacist, and she took my blood pressure and noted my pulse, and diagnosed Bradycardia and postural hypotension.
I then bought a pulse-oxy-logger and proved that my SPo2 was going down to 75 at night, and I got referred to a cardio, who correctly diagnosed (and seven years later, cured) Bradycardia and Atrial Fibrillation.
Hi Em... I was initially misdiagnosed by my local GP when I called them out having major chest pains. The GP came out and told me it was anxiety ( I was 33 and had a young baby) although I was very exhausted and felt ill when I went in the next day... she again said it was nothing to be worried about.
It took 3 months of struggling before they finally took me to hospital where it was discovered I had had a major HA and due to having had no treatment this had then caused me to have HF. Which if had been treated at the time they could have limited any damage!
I spent a year back and forth to my GP with breathlessness. Because I have three other conditions that cause spinal and muscular problems he put it down to a muscular cause restricting my lungs. Out of the blue in AUgust I had a heart attack. About a month previously an on call doctor had suggested having a heart stress test because of family history. Because I was worried about being injected with drugs to make my heart race, my GP said it wasn't necessary so I didn't go. If I had it could either have caused a heart attack or shown the danger. Even when I had the heart attack, it was pretty much non urgent at A&E and it was several hours before I was put on a monitor and blood test done; all because I had no chest pain; just bad indigestion and pain in my arm. I'd called 111 about 5 hours earlier and had seen teh on call doctor who just said it was muscular too.
I was diagnosed with poorly controlled asthma in the summer to finally getting a true diagnosis today of Mitral Regurgitation with a low left ventricular ejection fraction which is abnormal for someone of my age.
Hi again! I want to take the time to say thank you all very much for the time you took to tell me your stories & experiences in confidence to me for my research project 
I used some of your stories within my fictional chapter & my tutors who read it were quite impressed.
I'm currently doing a survey for this to form part of another chapter within my project & it would mean the world to me if you could all kindly fill it out please?
Thank you!
Hi yeh I was told for years I had different heart beats but nothing seriouse and just to take flecinide tablets. Then three years later last month whilst looking for cancer in my lungs as just been diagnosed with colon cancer but two years prior to this also had breast cancer so you can imagine iv had ct scan a few times before this one just in February 2019. And it was then they found out I have a rare heart defect which is called anomalous pulmonary venous drainage. Also called papvr. That is partial anomalous pulmonary venous return. But when I saw my own gp and a cardiologist today they have never heard of it and none of them know anything about this defect. They both thought it was a lung problem not a heart problem. So who will help me if they can't. I'm just exsuasted now trying to get help with this. Don't know where to go now. I really need help and advice. X
At 41 I was diagnosed with Heart Block and had a pacemaker fitted.
All my life, even as a small child I suffered "faints". I would fall to the floor and be out cold for anything from a few seconds to a few minutes. As I got older I stopped bouncing and caused physical injuries.
It was diagnosed as temper when I was young. Hormones as a teen. A form of migraine, epilepsy, a phobia of being sick and a problem with my ears as an adult.
I had every test possible, EEG, ECG, Adrenal Gland, Tilt Tables, so many blood tests, basically you name it I had it.
Then at 40 I saw a locum GP and he sent me to see a Cardiologist who fitted a reveal device which showed up Heart Block.
I now also have an irregular heartbeat and take Sintrom to thin my blood as I have clots. This was picked upon in March 2023 at Pacemaker Clinc.
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