cardiomyopathies, help

[Liam7755]

Hi Medhelp,

I am a new member, seeking to find other people's experiences and knowledge on certain things regarding heart problems.

I am young, male and keep active most days, weightlifting. I work out no more then 45 minutes a day 6 times a week.

I have had prior heart work-ups as i felt skipped beats during 2 or 3 of my routines one day. The tests i had concluded i was feeling the odd PVC and PAC!.

I know a fair bit now about Hypertrophic cardiomyopathy and ARVC, due to word of mouth from my E.P before the results came back, and what things may cause skipped beats in youngsters, when exercising.

Things i didnt get to ask were ;

How quickly does hypertrophic cardiomyopathy and ARVC develop? Are we talking months or years?
If i had an echocardiogram aged 20, is there any need to repeat one in the next 5 years?
I understand 90% of the time, cardiomyopathy is easily spotted even with an EKG, due to the t-wave's. Would or could there ever be hypertrophy on the heart, that for some strange reason DOESN'T increase the waves or make them inverted?

[Liam7755]

Thanks for your reply.

I have had an echovardiogram, aged 20. So technically post pubertal. I always wondered if I was too harbour such a condition, how long would it take for thickening to progress? Is it a matter or weeks months or years? I was led to believe if it isn't developed by aged 18+ then its likely to take 5-10 years to develop as major growth has already been completed .

[Mom2four85]

I just had my 14 & 16 yr olds fully tested since my youngest has had fainting spells and arrhythmia's since age 9.

The cardiologist knew quite a bit about HCM and said normally it can start developing around puberty, most likely due to growth, but can show up at any time.  Since they're at high risk, they have to do testing yearly until early twenties, then every 3-5 years, unless they're symptomatic at that point.

Even amongst the 17 doctors (cardiologists & ep's) I've seen, it all depends on what they were taught and experienced because HCM is a very perplexing disease.

Maybe doctors I've seen did not know about HCM/HOCM or the EKG's just haven't picked up whatever it is with the thickening of the LV. I've had all kinds of weird results on my testing. (they're in my profile page)

I had ekg's for chest pains and arrhythmia's from the time I was 20 until I was 42 and not one primary physician ever thought what they saw or heard, warranted enough to go to a specialist.

In 2009, I got dizzy and fell, breaking my foot and went to a dr on call who happened to be an ER dr.  He sent me to a cardiologist because what he heard alarmed him.

My question has always been; if it's a genetic disease then hasn't it always been there? Dr's say yes, but doesn't always manifest in symptoms or show in testing.  I had symptoms but HCM mimics so many other diseases it was mistaken for something else.

Usually they do EKG, Echo and then Holter monitoring if those show anything.  In my case, I also had a stress test & cardiac MRI which was non specific and technically difficult, it wasn't until a cardiac cath that showed what was wrong with me.

According to the HCMA - the AHA and ACC in young healthy asymptomatic people, ECG is not warranted.  

However, anyone with a family history of unexplained death, sudden cardiac arrest or fainting should be tested.

How long does it take to manifest? Why does it show up earlier in some than others etc?  I can't say and I know the many doctors I've seen don't know that answer for me either.

[Liam7755]

thanks for your response mom2four85. Thats what ive always questioned. you hear of an individual who says they were dx aged 30 odd or 40 odd and how they had ecg's in there 20s that didnt show it. it makes you have to question, at what point did it develop and how long was the process type thing.

[Mom2four85]

I have Obstructive HCM and was not dx until I was 42 even though I had numerous EKG's and echos.  Not even an MRI showed my HOCM just weird findings, so I had to have a cardiac cath that showed the LVH & high pressures etc.

I have a very lengthy health history starting at age 9 with fainting and palpitations worsening with SOB and fatigue throughout my life. Dr's told me nothing was wrong until I broke my foot and went to a dr that was an ER physician and was having roughly 50,000 pvc's.  

Previously, I did have various symptoms such as heart enlargement with the syncope and palpitation but nothing definitive in testing so I was a bit skeptical about the dx.

HCM is def a difficult thing to dx sometimes since some of the symptoms mimic other conditions. HCM is a very common disease 1/500 people can have it and not know.

The Hypertrophic Cardiomyopathy association has a risk assessment for people who are at low risk and high risk (4hcm.org HCM tab and screening).

If you think you're at risk, it's better to be safe have peace of mind with an Echo.