I’m writing today to thank you for all your excellent advice and support during my long, hard journey with myocarditis. You explained how important it is to rest and rest some more, even when feeling better. And you were right: this most recent MRI showed all the swelling and inflammation gone, the EFs better (not great but better, 55% and 62%), and despite ongoing arrhythmias (thankfully not AFIB), which will be addressed by a different team, there is no scarring or fibrosis! That is the best news, as it means no permanent damage. The doctor said this is very lucky and it means I gave the heart a full and decent rest.
And that, my forum friends, is entirely thanks to you! And your good cautions and explanations. I’m very grateful, and I wish you all a beautiful and heart-healthy February.
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Britomartis29
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hello! That’s excellent news. Can I ask how long it took to recover and if you had a follow up cMRI please? Also do you know what caused your myocarditis? Asking as I’m recovering currently- 5 months since diagnosis
Yes—-overall almost 16 months. Technically not diagnosed for the first few months of feeling horrible and having chest pain and collapsing; but overall about 16 months. I rested a whole year. And I mean really did just about nothing, no exercise, no walking or swimming or housecleaning or anything—I had previously been very active and fit. Yes, I had a total of three cardiac perfusion MRIs and #1 was pretty bad with edema and inflammation, enlarged wall of heart and abnormal distortion around valves. #2 was better: visibly reduced edema and inflammation , walls still thick but EFs still low. The final one at end of January showed no edema, no inflammation, no distortion, walls normal, EFs ok enough to count as normal (but not the 67% of long-ago yore!). And the most important finding, said the cardiologist, was no fibrosis or scarring.
Cause was never determined. Because I also have lupus their first thought was lupus myocarditis but all that testing was negative. Then, because I’ve been in medicines a long time for lupus, they ruled out Plaquenil cardiotoxicity ; they said it could have been a virus or a bacterial infection(but I was never sick) which are the likeliest causes., they said. “Unknown etiology” is what’s on the chart.🤷♀️
Good luck, and really truly, do rest more than you think you need to! Thanks again, forumites. ❤️
How wonderful! Thank you for letting us know, absolutely beautiful to hear, so well done to you for resting and being so patient!! May you go from strength to strength & see your fitness/active life return
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