Repeat MRI Results Myocarditis

[Sadheart69]

My 18 yr old daughter had Myocarditis in Jan and had a repeat CMRI in June. She received her results; a 3 line letter with no explanation for a non medic, along with an appointment for March!I phoned the consultants secretary who was very helpful and advised that this is the first available routine appointment. She also said my daughter was to continue with her medication and to contact her if anything changed.

On the one hand I am assuming there is no need for immediate concern as otherwise she would have a 'non routine appointment' but on the other of course I am concerned....I want to know what the results mean!!!!

I have written to the secretary asking for some clarification as my daughter is off to uni for the first time in 4 weeks!

Why do they send the results without even a couple of lines explanation?. In some ways it's worse than getting no results at all!

[BeKind28-]

Hello

I can totally understand your frustration I would feel the same

I wonder if she could get a Doctors appointment they should have received a copy as well as her taking hers with her and they should be able to explain what it means x

[Captain_Birdseye]

It's so frustrating, I hope you get answers soon.

When she goes off to uni, it might be an idea for her to inform her main tutor/welfare officer. She will need to register with a GP if she's moving so it would be worth making an appointment and bringing them up to speed (they may be able to offer guidance).

You can also ask the secretary to be placed on a cancellation list.

[Sadheart69]

Thank you for your replies. Your suggestions to see the GP are a good idea although getting an appointment with him is almost as difficult as getting one with the consultant! 🤣The university sent a health questionnaire so she has already been able to inforrm them .

She was given advice (and quite a positive prognosis) on her discharge as to how to proceed for the next 6 months but 8 months on we are now totally in the dark as to what she can expect going forward. Surely if she was better he would have discharged her and stopped her medication? So I don't know what to think.

[Elsabounre in reply to Sadheart69]

Sadly many young ones have contracted this same myocarditis after receiving the injections that we cannot mention...hope for her it will go away completely

[Sadheart69 in reply to Elsabounre]

My daughter's was as a result of catching the flu which then infected her heart.

[Hidden in reply to Sadheart69]

Sad to hear of your daughters problem. Do you use the nhs app. That's where I get to see the majority of my letters before they come via snail mail. The only down side is I carnt see my hospital notes. I don't know if there is a way of seeing these? This myocarditis is horrible and yes it can come from many infections. I suppose many of us may have had attacks over the years and we think nothing of them if they are mild. I hope she gets well soon and takes care of herself.