Myocarditis?: Hello everyone. I was... - British Heart Fou...

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Myocarditis?

Curlyanne
Curlyanne

Hello everyone.

I was admitted by ambulance to hospital two weeks ago following chest pains at work. Following a week of numerous tests as an inpatient, CT scan, echocardiogram, stress test, angiogram and MRI scan, I am waiting for a final diagnosis. Echo showed some damage to the left ventrical and blood enzymes were elevated. However, ct and angiogram showed no restricted flow or blockages to my artieries. I’m now waiting for MRI results as an out patient for a final diagnosis. The consultants are now mentioning myocarditis as a possible cause due to absence of coronary disease. I was wondering if any one has had the same experience or has been diagnosed with myocarditis? Also wondering if any one has experienced any visual disturbance following tests that last for up to 30 minutes then disappear?

Best wishes

7 Replies
oldestnewest

Hi Curlyanne

What you are describing could be very much be non obstructive coronary artery disease. It happens when the very small arteries that cannot be seen are blocked while the larger ones are not. It is also called coronary microvascular disease.

A very real thing that cardiologists are starting to identify. Not all though.

This disease is not as benign as it was thought to be. My advice is get yourself checked. It needs to be ruled out not ignored. Although tricky to identify. Walk away from any cordiologist that is not capable of discussing this with you.

This was my experience with them.

Good luck.

Curlyanne
Curlyanne
in reply to Haitham73

Hello, many thanks for taking the time to reply. No one has mentioned this to me as a possibility, which is worrying as I saw at least 6 cardiologists during my hospital stay. If the MRI doesn’t indicate this, I will certainly mention it at my outpatient consultation. With so many tests available, it amazes me that there is so much uncertainty.

Best wishes.

Haitham73
Haitham73
in reply to Curlyanne

Hi there

It needs specific stress perfusion MRI to look at the the perfusion of blood on the heart muscle. A cardiac MRI not looking for that will not find it.

I have struggled with cardiologists in three different countries and I have always been dismissed as having something else.

You have professor J Kaski, Professor Peter Collins in London and another one at the refractory angina clinic at Bradford UH who I know that understand this disease.

If your cardiologist can prove myocarditis then ok otherwise ask for a referral to one of these guys.

BTW GPs and A&E doctors are not very helpful when it comes to this condition.

there are YouTube videos and hundreds of web pages on this.

Good luck

Curlyanne
Curlyanne
in reply to Haitham73

Thank you again for sharing your knowledge. Do you have any experience of the visual disturbances I mentioned in my original post? The first time it happened was when I came out of the angiogram. The nurse told me to drink lots of water as it was probably dye related. Since then, it’s happened 3 times. Each time lasts up to 3o mins. I’ve googled and it looks like something called ocular migraine. No pain, just weird zigzags that spread across the whole of my vision, both eyes, then disappear. I’ve never suffered from migraine of any type before and research mentions a rare side effect of angio.

Many thanks

Hello Curlyanne, your experience sounds quite similar to mine. I was diagnosed with myocarditis and pericarditis. My understanding is that it is the MRI scan that confirms this, as that is the test that can ‘see’ the inflammation. Hopefully you will know more soon.

I didn’t experience any visual disturbances due to the tests. Are you on any medication? Just wondering if that could be the cause?

Hello, thank you for your reply. Sorry to hear that you are having to go through this too. Yes, I am on 1.5g rampiril and 2.5g bisoparol until I get the MRI results. I have low blood pressure naturally so I think the meds aren’t making me feel better but I do understand they are probably trying to keep things ‘surpressed’ until they do have answers. My Gp didn’t seem to know what would cause the visual thing, advised to go to A and E if it happens again. As you can guess I am reluctant to end up in hospital again!

Best wishes

Curlyanne
Curlyanne
in reply to Curlyanne

Hello all, just an update.

I have just received a diagnosis from the MRI scan - acute myocarditis with mild left ventricular systolic dysfunction with focal dyskinesia in the mid anterior wall. I am awaiting an appointment with the consultant to discuss. As you can imagine I could do with a translation of what exactly all of this means both for my recovery and what to expect for my future.

Do any of the people who have kindly replied so far have any knowledge? I understand myocarditis but not the description of the full diagnosis.

Thank you

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