MRI results and wrong diagnosis?

[Healing_Heart]

I finally had my appointment with the cardiologist today and she told me that I don’t have Myocarditis in the end but had a “mini heart attack”. I broke down when she told me 😥. She said it’s one of the smaller veins and not the arteries. She seemed surprised and even annoyed by my reaction.

Now I don’t know what to think about all this and how bad it is. I was left for over two months with no meds and now I have meds for the heart, high BP and cholesterol! My BP was very high again, at a 18/11.

I feel lost and confused by this change in diagnosis, and can’t understand how serious it is.

I’m also thinking of asking another doctor to have a second opinion. The doctor based her conclusions as she said there was necrosis but no sign of Myocarditis. But the MRI was done 7 weeks after the first symptoms.

The doctor said I can “lead a normal life” (I’d been resting until now) - that is except sport- and couldnt see why I feel short of breath.

Any reassurance and sympathy will be welcome 😌

[Fanfab1]

hi second opinion is good idea not necessarily because she might be wrong but there appears to be a bit gaslighting here - your reaction and symptoms are real for YOU and should be respected as such. I’d be shocked. You’re entitled to a second opinion and she should not have a problem with that. I have previously asked for second opinion in a very polite letter - and the cardiologist agreed and without hesitation referred me to his colleague who was far better. Maybe he just wanted to get rid of me 😂

It’s not necessarily you will get someone ‘better’ and the answer could be the same but how they deliver / explain and acknowledge your feelings / symptoms might improve and you may always wonder otherwise.

I do think you have to kiss a few frogs before you find a cardiologist who you can work with and communicate well with.

Good luck!

[Winter4519]

Sorry to hear that. yes it is shocking to get news such as that and it will take sometime to comprehended and digest your condition. Moving on from this you will now get the treatment and support especially being on this sight and from your heart nurse. advice each time you go on your appointment make a list of what you want to know about diagnosed, the type of medication etc. Speak with your GP to have you referred for counselling, they do have a section where their support patients with health conditions. Good luck

[Coffeelover2]

The doctors confused me at the start as I was unsure whether I had a heart attack or not but they put me on meds quickly. Did you have an MRI and CT scan? Push for tests and try to get answers. I have found they answer emails in between appointments. Second opinion would be fine as I managed to be referrred to a CVD clinic. MRI will show heart attack damage, 7 weeks and longer after the event. I’m no way an expert but I think myocarditis and a heart attack would look quite different on a scan.

It is stressful and worrying but you can certainly live a normal and fulfilling life. Hopefully you get the treatment and support you need. You are certainly not alone in this. I haven’t had cardiac rehab but I’ve heard it is good.

[Healing_Heart in reply to Coffeelover2]

Hi Coffeelover, thanks for your reply. No, I didn’t have a CT scan but apparently the MRI showed some damage. Ultrasounds, Doppler and ECG showed nothing. What did doctors base their diagnosis on in your case?

[Coffeelover2 in reply to Healing_Heart]

They based it on the MRI. The CT scan showed mild narrowing of an artery and evidence of pericarditis. MRI showed I had a heart attack but the second one I had showed some healing. The letter they sent me said the heart attack was not present but I contacted them, they said the evidence was still there and 1 segment was still unviable. It is worth clarifying with doctors.

[Stuartc100]

i was under the impression that bloods show a heart attack cant remember what chemical i released but thats what they test for? isnt peri and myo inflammation of the heart walls?

[Coffeelover2 in reply to Stuartc100]

Troponin but I think this is only at the time and not afterwards

[Stuartc100 in reply to Coffeelover2]

thats the one!

[Milkfairy Heart Star in reply to Stuartc100]

Troponin is a protein released by the heart muscle when it has been damaged or inflammation is present.

Troponin blood levels usually rise then fall during an acute cardiac event such as a heart attack or acute coronary syndrome.

Raised levels of troponin can be detected upto two weeks afterwards in the blood.

Troponin blood levels can also be raised by inflammation of the heart muscle due to endocarditis, myocarditis or pericarditis.

A cardiac perfusion MRI can look at the heart muscle itself.

I have had myocarditis in the past and this has left scarring on my heart.

[Healing_Heart in reply to Milkfairy]

Hi Milkfairy, yes precisely. Another option could have been scarring due to Myocarditus but I suppose they’d expect to see some inflammation. The mRI was done 7 weeks after the rise in troponins.m, which is why I’m confused.

[Milkfairy Heart Star in reply to Healing_Heart]

I am not surprised you are confused. I have had several cardiac MRIs and each time they see scarring rather than inflammation.

Do you have any on going symptoms such as chestpain?

My myocarditis caused on going dull aching chest pain and fatigue.

My situation is further complicated. I too was thought to have had a heart attack 11 years ago. I was incorrectly told I couldn't have angina or a heart attack because my coronary arteries are unobstructed.

I was later diagnosed with vasospastic angina which is caused by transient constrictions of my coronary arteries and can cause a heart attack.

I suggest you ask the Cardiologist at your upcoming appointment, why you had a heart attack.

[Healing_Heart in reply to Milkfairy]

Thanks a lot for the advice, I’ll mention angina to him and see what he has to say. It is indeed confusing 😥.

I don’t have any more chest pain now (but careful to eat little) but I’m not breathing well. I’ve just looked up the symptoms of angina and it does mention pain in the sternum 🙄 which is how the whole thing started, both times at night. It seems to make sense too as Ive read it can be triggered by heavy meals.

Are spasms always painful?

[Milkfairy Heart Star in reply to Healing_Heart]

Not everyone feels pain when they have a lack of blood supply to the heart, angina.

Some people feel pressure or thightness. It can feel like your bra is too tight.

Breathlessness is another symptom that women can experience especially if they have microvascular angina.

[Oldgimmer66]

Hi. It’s completely understandable why you would have that reaction. It’s a shock when you are told that a rather essential organ is having problems. I don’t know whether you have had Covid, but a cardiologist told me that the disease has thrown the medical profession into the unknown.

As a result it seems that patients are now just thrown the standard meds to control BP, cholesterol, and widen arteries I was diagnosed as having Myocarditis at first and given all three

I have heart issues and breathlessness, and it seems these go together. All I would say is try not to worry. There are lots of people in the same boat and we’re all continuing to live fulfilling lives. It just takes a little adjustment. Best wishes to you.

[fishonabike]

i am sorry to hear that you were so distressed by your change of diagnosiswe expect our doctors to be infallible and to always know the answers - that is easy for them when the answer is clear and they have the right experience, skills and knowledge .......... but it is not always clear

there are lots of possible reasons for your cardiologist changing your diagnosis but new information ( e.g. from tests and investigations) would usually be a starting point

you may not be aware that the symptoms of heart attacks are often different in women and women often explain these symptoms in a different way to men - not all cardiologists are fully aware of this and do not take this into account when dealing with patients

also women can have different types of heart condition which are poorly understood at this stage - you may have one of these which has not yet been recognised by your doctor

I see you are in France, i know that the medical system is different so you may be able to see a different cardiologist more easily than members in UK - if you do not feel you have confidence in your current cardiiologist then you should probably find a different one - but nothing can change what you have already been through physically or emotionally - a new doctor can only change what treatment you get from now on, what happened to your heart can't change - sometimes uncertainty is harder to deal with than being given a clear diagnosis, but there are few certainties with health and this has obviously shaken you - maybe it would also help if you found someone to help you with your emotional response

i hope you find what you need soon

[Healing_Heart in reply to fishonabike]

Thanks a lot Fishonabike, yes I have found another cardiologist for my next appointment, than the one from the hospital. In the meantime my GP will help me monitor my BP and I’m also going to contact a rehab centre.

[davejonestone2021]

I hope you’re okay, my cardiologist couldn’t read the echocardiogram, I found this a bit unprofessional and she took ages to do it. I have a neighbour who had a heart attack a massive one and is doing great.