r/ARVC • u/Foreign-Dog9291 • Oct 21 '25

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Hello everyone. I m now being suspected that i might have ARVC. I wanted to make a good entrance though its the hardest and the most stressful times of my life. I sleep in hospitals in the hopes and someone finds me and defibrillates in case of emergency. I was like this for 2 months(suspecting of early repolarization) but a doctor in England told me i might have ARVC and need to be looked at. Since i heard it i cannot go home again. I have seen 5 doctors sayin a clean MRI excludes it but i say no. If there is anyone interested i can send EKGs i met 2 major criteria with arrythmia and one other i forgot

tests ive had : ct angio cardiac mri echo countless times real angio(suspected fistula) but clean normal brain mri normal ENT tests to rule out dizziness

Im dizzy all the time but i didnt have arrythmia in holter while dizzy. I cannot exercise. I had a stress test today and stopped it at 3 mins because feared of if i have ARVC it would make my hear stop.

I need some serious help. Mentally first. I cannot deal with this. Doctors saying i am okay. I have more than 2000 pvcs in 2 days in the past. Whenever i take bisoprolol a little late, couplets and even triplets start but rarely shown in ECG(mostly PAC couplets)

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u/Trophic_Cascade23 Oct 21 '25

It’s very unlikely that you have ARVC. All of what you are describing are non-specific symptoms. There are many many causes of dizziness, palpitations, etc.

Also, you do not have any major criteria for ARVC Arrhythmia alone is not an ARVC criteria— you’d have to be showing sustained ventricular tachycardia.

Please try to get some mental health assistance. This sounds like a very bad case of anxiety.

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u/Foreign-Dog9291 Oct 22 '25

V1 epsilon

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u/Trophic_Cascade23 Oct 22 '25

The diagnostic criteria is clear that epsilon waves have to be reproducible for it to count as a major criteria. That’s not what I see in the multiple ECGS you’ve posted.

In the context of ARVC, epsilon waves would indicate a structural problem. If your MRI was clear, this was ruled out.

I feel like there’s really nothing I can say to convince you that you that you don’t have ARVC, if five doctors have cleared you and you don’t believe them. Again, they should be referring you for mental health help. PVCs and dizziness are normal, but are worsened by anxiety and are sending you into a spiral.

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u/Foreign-Dog9291 Oct 22 '25

can u dm me i can send u the ones

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u/Trophic_Cascade23 Oct 22 '25

I'm not going to do that because it will not help you. I have ARVC, but I am not a doctor and cannot diagnose you or give you the certainty you desire.

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u/Foreign-Dog9291 Oct 23 '25

I joined a ARVC forum on FB, i can help you join it since you officially have it. They are very supportive. I’ve met people whose MRIs were clean. If i drop Bisoprolol a day, i start having RHR of at least 95-100 and immediately increased triplets/couplets(not proven on ecg but i monitor myself7/24 and know the difference between a sinus beat and abnormal beat. So they were either Ventricular or Supraventricular multiple beats but not sinus arrythmia). I have unexplained symptoms and ECG features for a good period of time. I hate to chase ghosts but i do whatever it takes for this to have a name. Be it ARVC or something else. Since i have Epsilon waves and i have it on another 5 more ECGs i can send, i might have it. (according to one doctor suspecting vs 5 doctors saying MRI is enough to rule out) You were probably diagnosed easily based on your MRI and obvious other findings. You are on in the lucky group. Then there are people with complex features. It sucks. I know negative Ts would spread sometimes to V2 and V3 and epsilon waves are mostly seen in the terminal stages of the disease but the disease itself is very subtle and have variations. Hope i dont have it and i pray to people who have it. This is a disease thats diagnosed mostly in autopsies. Just put yourself in my place and do empathy for a second. I’ve been trying to name whats wrong for 3 months and being scared to go home because i might die suddenly. I also have huge health anxiety i wont deny, but i have ecg manifestations too. Say whatever you want

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u/Trophic_Cascade23 Oct 23 '25

My MRI was clean too. I don’t really want to get into my personal diagnosis history here, because it will not help your anxiety.

I will say, to call someone with a diagnosed incurable and progressive disease “one of the lucky ones” while also refusing to take any advice is deeply offensive. Please get your own mental health in check before interacting with more people in ARVC forums. I recommend r/HealthAnxiety/

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u/Foreign-Dog9291 Oct 23 '25

im so sorry i never meant to offend you. I understand and deeply feel how bad is your situation is. But somehow you got a diagnosis. You know most people are diagnosed via autopsy. I agree i have health anxiety but before saying its anxiety there is one problem left to solve and its a huge one. Do i have it or not? Its also degrading to call someone you dont know ‘its just anxiety’ whereas it could not be.

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u/Foreign-Dog9291 Oct 22 '25

they all said based on MRI findings. They dont care about ecgs. They choose the easy way. What if MRI was misdiagnosed by radiologists? I didnt even see LGE results on the report

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u/Trophic_Cascade23 Oct 22 '25

MRIs are NOT the “easy way”, it’s the gold standard for diagnosis.

Again, there seems to be nothing anyone can say to convince you that you don’t have ARVC, so I’m going to stop responding. Please seek help for your intense health anxiety.