Any one with myocarditis ?

[Jodieleigh]

My daughter who is 29 has been suffering with pericarditis for a year , suffering daily with chest pain since the onset and feeling extremely ill , often bed bound . Finally after numerous tests , an mri has showed she has myocarditis with thickening , still waiting for a cardioligist appointment ! As you can imagine i’m beyond worried , anyone else have this or both , any advice ? Positive storys would be of much help Thank you

[Labradorgirl]

Hi jodieleigh

I have been diagnosed with myocarditis after being told I had a heart attack. The mri confirmed this. I am 62 so clearly older than your daughter.

My main problem is tiredness and after exercise I feel worse.

I have just literally spoken to a BHF nurse this morning who was really helpful, much more so than my GP or cardiac rehab. I think that it is a not very well understood condition. I have been advised to seek a private cardiologist who specialises in myocarditis to get the help I need.

Maybe this might help you too .

I am currently not on any medication but bhf nurse said that ibuprofen is usually given for the inflammation and often heart meds to help the heart.is your daughter on any of these?

I think you need to keep banging on doors to get some answers as that’s what I am going to do now.

Hope this helps

Sylvia

[Jodieleigh in reply to Labradorgirl]

Thank you for your reply , she has been in ibupfofen , now colchcine for previous diagnosed pericarditis , which is for inflammation . Just feel left in limbo at the moment not knowing what to do for the best whilst waiting for cardioligist .

[Labradorgirl in reply to Jodieleigh]

The waiting is the worst part I think. I spent 17 weeks believing I’d had a heart attack until the MRI proved otherwise!

Make sure when you do go to the appointment that you have a list of questions to ask so that you can hopefully get some answers.

Good luck 😀

[Jodieleigh in reply to Labradorgirl]

I will

Write a list ready ! And thank you 😊