Myocarditis scar found after 2 years, what does this mean ?

[scousa]

Hello everyone,

I am a 22-year-old male and i was perfectly healthy before this started. It two years ago with a flu-like illness followed by mild shortness of breath and peripheral pains that are still with me now. However, blood work has always been normal (especially concerning infection and inflammation), so when i went to the ER when i had that flu, they suspected myocarditis but then eliminated it (says so on the report) because of the normal blood work and maybe the normal chest x-ray too. They did however tell me to get an echo because the ECG wasn't normal. During the following two years i had : normal crp and esr multiple times, 4 normal or "borderline normal" echos, same for ECG's that mostly went back to normal, and a stress test that showed fast heart rate but nothing else serious. But anyway, no doctor took me seriously and all said i was just fine, until the last cardiologist i saw had me do an MRI.

The MRI showed scars typical of myocarditis. The LV function is "borderline normal" with an EF of 59% (was 76% just 4 months earlier on a echo !). I have to wait a month before i get to see the cardiologist so a few answers before that would really help me relax.

What do these scars mean ? Are they normal and do they mean the disease is behind me ? In which case why do i still have the symptoms ?  Is it possible that the inflammation and damage is ongoing, or would the MRI have found active inflammation too ? Or do the scars mean I am now in the "chronic phase" ? In which case, what is the prognosis ? Are they what's making me short of breath so quickly and can they get better or worse ?


Thanks for reading and for any thoughts/experiences on this :)

[achillea]

Boy, is this ever a specialized question!  Few people here will have experienced this condition, and I'm afraid that you are going to have to wait until you see a cardiologist even to begin to know your diagnosis, treatment, and prognosis.

However, in the meantime, you can start to investigate the illness and organize your thoughts, so that when you do have your appointment with the cardio doc, you will have a notepad full of pointed and well-organized questions.  Here is a good introduction to the subject.  I am sure it will give you some answers--as well as many talking points to go over with your doctor:

http://www.myocarditisfoundation.org/r

[scousa]

Thanks a lot for the quick answer :)

I have been reading so much stuff on the internet that i can ask many more specialized questions lol

I was able to see a cardiologist (not mine) very quickly and also called my aunt who is a doctor. Both said that the scar doesn't mean anything if my heart is functioning properly, which it is according to the mri. However, the website you gave me says that the scar means that something called fibrosis has taken place and that it makes the heart work less well and may lead to dilated cardiomyopathy. I can imagine my aunt trying to calm me down (also she is not a cardiologist) but the cardiologist didn't mention anything about "chronic myocarditis" or even me having to watch my diet to take care of my heart now or something like that. According to him all is fine and my symptoms are caused by stress. Anyway, i am going to wait until i see the cardiologist who had me do the mri since he is the only one that didn't attribute all my symptoms to stress. Hopefully it won't be as bad as some of the stuff i read on the internet.

Thank you again :)

[achillea]

Scarring in the heart is somewhat different from scars elsewhere, and fibrosis is the general term.  However, the nature and amount of scarring is variable, and it need not be progressive, etc.  It's an individual thing, and I think you should be encouraged by the testing you have had.

Apropos of your visit with the next cardiologist, it often seems to me that when we see doctors about weird, stressful things, there's a tendency for our brains to short out.

I think it would be a good idea to start a kind of running Word document at this point, into which you could insert questions as they occur to you.  

A list like this would help to assure that the time you have with your cardiologist will indeed cover everything important to *you.*

[scousa]

I did think that scarring in the heart wouldn't be the same as on the skin, but this doctor didn't seem concerned by it in the least. I will definitely have a list of questions ready for the next appointment.