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pericarditis, cardiomyopathy-why is he not better?

My husband was diagnosed with pericarditis in January of this year. He was hospitalized in April for this. We went through the ringer- it was first a lymph problem, could be cancer, it is a fluid problem in the heart, lungs, stomach. He has now been diagnosed with pericarditis, cardiomyopathy, possible myocarditis, on the verge of constrictive pericarditis. The doctors have no answers as to why he is still in pain, still bloated, headaches, blood rushes to the head, nausea, every symptom possible- he has. He has gone through every test, endoscopy, colonoscopy (which showed CMV virus and coxsackie virus- not "running" around anymore- dormant), echo's, CT's... everything. They have no answers for us. The doctors are acting like we are a burden to them. They don't want to take the time to talk or do research. We are wanting to know if anyone else has gone through this. Is this or could this be chronic? We serious have no answers from the "experts". We are at our last straw. Please help! Any suggestions?
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My first symptoms were chest pains back in Jan. then in April I became very swollen legs, feet and stomach. After many days of me complaining my doctor finally got a ct scan done of my chest and abdomain, which showed fluid around my heart. I also had fluid in my lungs and stomach. From there they sent me to two different hospitals, and there final conclusion at the time was pericarditis. After many trials with different steriods and diuretics we finally got the fluid down. Then came the dizziness and the nausea feeling when ever I would get up to fast or walk up stairs, sometimes even when I am just sitting on the couch. My heart beat per minute is around 100 and when walking any where from 110 to 165. So finally in July I went back in to the emergency room for chest and stomach pains. They did another ct and an echo and found that my ejection fraction rate for my heart was at 45% most people 55 to 65. So they started me on lisinopril and coreg, which made the dizziness, lighthead, and nausea feelings triple I could barely walk a 100 yards without pressure in my head and feeling like I had to puke. So after enough complaining they took me off the meds. So now I still have pressure and nausea feelings, but can deal with them. My stomach is still swollen but hopefully will find an anwser for that soon. Towards the doctors make them do a stress test because most of my problems seem to multiply during activity. My first cardiologist said I didn't need one and has yet to explain what I have in full detail to me. My second cardiologist has my going in oct. 7 so hopefully we will find something out. All I know is don't expect anything out of your doctors you will have to do it all it seems. I am just thankfull that I have good insurance.
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Avatar universal
Hello there, i was diagnosed with pericarditis in august, was put on anti infamm   diclofenac 3 times a day. waiting for an echo on 15th october. Doctors also think i have a murmur one valve not closing properly i also have a slightly enlarged heart. And for the last 3 weeks i have not been too bad just a twinge now and then. But just the other night i had a really bad dizzy spell. thought i was going to pass out. Then a chest pain . Then yesterday daytime dizziness and nausea.. I went to the doctors again. But they said wait for the echo and we will know more then. But i am so worried about it. I am a 6' 2 " firefighter. Fit and healthy until this. And all day today on and off i just feel light headed and dizzy. very worrying times. How did your symptoms first start? any similariities to mine.
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