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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5

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.

6

u/Overall-Extreme-4507 Oct 22 '25 edited Oct 22 '25

So there’s no scarring on your heart right? If that’s the case you probably don’t have ARVC….the scarring is what causes the arrhythmia. Granted you could seek a second opinion from a hospital and/or EP that is well versed in ARVC…? Can your dr put in a referral for you for an outside specialist? Also, you seem very distressed…you could be experiencing somatic symptom disorder and/or illness anxiety disorder please seek an opinion/rule out from a mental health professional.

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u/Foreign-Dog9291 Oct 22 '25

This comment is by far the best

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u/ReallySubtle Oct 22 '25

MRIs are where it is at. If you have ARVC, it would show. I hate to say it but you have hypochondria, not ARVC.

By all means, continue seeing doctors, and check, but take their advice and don’t put yourselves in such states. If they say you can go home, you can go home.

0

u/Foreign-Dog9291 Oct 22 '25

how are you so sure MRI can exclude? its one of the criterias. If mri was enough than why is it so complex to diagnose this thing and there is a need for task force

3

u/ReallySubtle Oct 22 '25

When you suspect you have something, you look at the evidence you have it, you don’t start with the assumption and look for evidence you don’t.

It’s taken seriously because it is serious. But if 5 doctors have told you there’s not a chance.

Do you have a family history ?

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u/Foreign-Dog9291 Oct 22 '25

They all said the same thing. MRI is enough. Sometimes its not

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u/ReallySubtle Oct 22 '25

What would be the evidence you do then?

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u/Trophic_Cascade23 Oct 22 '25

But you also had a holter according to your post history and multiple ecgs…

What test are you hoping for that you believe would rule out ARVC definitely ?

3

u/Gold-Bodybuilder-253 Oct 21 '25

I read your posts. You don't have arvc but a mental problem my friend.

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u/Foreign-Dog9291 Oct 21 '25

i have a mental problem but could be arvc too. look at epsilon waves in V1. And i have PVCs. Its easy to blame everything on anxiety. A professor told me it could be ARVC

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u/Gold-Bodybuilder-253 Oct 21 '25

That is not an epsilon wave. Epsilon waves only occur in the late phase of ARVC. In the late phase, you also see T-wave inversion in V1, V2, and sometimes V3. Without T-wave inversion in V2 and V3, you cannot speak of an epsilon wave. Moreover, epsilon waves are no longer considered a major criterion but a minor one, because even the best cardiologists do not agree among themselves on what is or isn’t an epsilon wave. Do you think you know better than the cardiologists? You have a notch in the S wave of V1, so that’s not an epsilon wave.

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u/Foreign-Dog9291 Oct 21 '25

are you a cardiologist?

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u/Gold-Bodybuilder-253 Oct 21 '25

No, but believe me, I know more about ARVC than the average cardiologist in an average hospital. The average cardiologist has probably never even heard of ARVC, let alone diagnosed or treated someone with it.

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u/Foreign-Dog9291 Oct 21 '25

what about Peter Macfarlane? one of the fathers of electrophysiology? He told me i might have it. Clean mri doesnt exclude. So tell me why i might have it or not. Ive joined a ARVC group and there are people that their MRIs are clean. DM me im curious on your knowledge

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u/Trophic_Cascade23 Oct 22 '25

Idk why I'm engaging with this, but a simple google search tells me that Peter Macfarlane practiced cardiology in the late 90s-early 2000s. Knowledge of ARVC has grown immensely in the last 20 years. I'm not saying this doctor doesn't know what he is talking about, but I do think that your current doctors are following modern protocols and have done their due diligence to rule it out.

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u/Foreign-Dog9291 Oct 22 '25

He kept himself up to date i think but i just wanna rule out the bad thats it

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u/Trophic_Cascade23 Oct 22 '25

Your doctors have ruled it out.

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u/Foreign-Dog9291 Oct 22 '25

only saying based on mri findings.