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Myocarditis
Has anyone ever had Myocarditis? For three months now I've been treated for pericarditis only for the doctors to tell me in my most recent MRI scan they saw myocarditis. And they are telling me I have a scarred heart now. I wore a halter monitor for 2 weeks and they recorded arrhythmias. I go to this big famous academic medical center in Chicago, and it seems like they have no idea what to do about it. I have daily symptoms, and all my cardiologist is doing right now is tapering me down from medication I've been on for pericarditis and telling me I next need a PET scan. I had two CT scans within two weeks of each other, the amount of radiation I'm being exposed to is unbelievable. It is beyond frustrating. Every single day for three months I've been in pain and have had breathing trouble. I feel like nobody is listening to me at all.
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I was told, after a few months, that I have/had pericarditis...recurring. After many xrays and blood work because of the pain in chest and radiating up to neck and shoulders...... and in and out of urgent care, I developed a fever of 101.5 and was told to go to ER.
They did a ultrasound and saw fluid around my heart, pericardial effusion. I was in hosp. for 7 days. They did a pericardiocentesis within a couple days. I had very large amount of bloody fluid, they said approx 700 ml....all the medical staff seemed shocked. I had a drain in for 3 days. A stress test showed no damage to heart and I didn't suffer a cardiac tamponade. I went home after getting pain and fever down. I was told they were looking for some type of lymphoma but were waiting for labs to come back from Mayo in Rochester, MN.
I had different pain and fever 2 days later and couldn't breath. Back to ER where they discovered a pleural effusion. That was drained and again waiting for fever to stay down. An appointment with oncology was cancelled, as labs had not come back yet on what type of lymphoma was happening in my body.
Meanwhile one of the many scans showed very enlarged lymph nodes. They did a procedure through mouth to get biopsies on them. Dr. said he got very good samples and, yes, they did look suspicious. Went home after 5 days on colchicine and 40 mg prednisome/day for inflammation. I have allergy to aspirin....they tried a desensitizing trial but I flunked.
I was back in again with pain, in chest, assuming fluid building up. There was some, but they decided to not go in there around heart again. I was in for 3 days, and finally labs came back and a large group of med staff came in to announce that no malignancies were found.
We had a good month and as the pred. titrated down/2 weeks, there was fluid and pain back again when the level was a week into the 20 mg. point.
This time they decided to go to 30 mg of prednisone and titrate down 5 mg every 2 weeks. Now I'm at 10 mg every day, but will go down only 2 mg at a time.
I've had several out patient scans and more to come this winter, but so far feeling better. They all feel it was caused by some type of virus. Possibly damage caused by Covid, which I had very mild--twice. I've had every vaccination and booster since the beginning.
I interested in your story and everyone else's'.