MRI confirmed ALVC + DSP2 mutation = worried
38F, caucasian, sedentary job but walk a lot + some weight lifting. Been taking Bisoprolol since I was 15 - current dose is 2,5mg morning + 2,5mg evening.
Some history: frequent palpitations, ectopic beats since adolescence for which I've been to cardiologists since I was about 18 years old. The palpitations and ectopic beats are more frequent when stressed, but are always there + I have a history of health anxiety due to this.
Last year my cardiologist sent my file to the university hospital for advice, and I'm now going there for further followup. Since then I underwent another bike test, a heart MRI and genetic testing.
Images (sorry the reports are mostly in Dutch):
- 1 & 2 = MRI report (I have all images available as dcm files, but there's almost 500 of them so I don't know exactly which ones to add) - summary: some scar tissue on the left ventricle + LVEF 56% which I was told is normal - conclusion is Arrhythmogenic left ventricular cardiomyopathy. https://ibb.co/zVJqpR1N + https://ibb.co/fGT6jt0V
- 3 = EKG and cyclo result shows multifocal ventricular extrasystoles, a previous holter also showed ventricular bigeminy https://ibb.co/SwtvtkKj
- 4 = genetic testing shows mutation of DSP2 gene. The hospital suggests genetic testing for direct family as well. https://ibb.co/kgj1CRYb
I am super worried now, and I made the mistake of googling ALVC... Some questions:
- treatment for now is to continue Bisoprolol at this dose + adding Flecainide to see if it helps with the palpitations and ectopic beats - is Flecainide safe for me since I don't really have a structurally normal heart?
- do I need to alter my lifestyle or pay special attention to something? I'm going hiking in the Alps in June, am I at risk of dropping dead when exerting myself? Warning signs I need to look out for?
- would I need an ICD in the future - how is decided at what point an ICD is necessary/beneficial?
Sorry for all the questions, but thank you in advance for even reading through this whole post! Any help, tips, or relevant info is welcome, and happy to add more imaging or explanations where needed.
Edited to add image links.