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lgrass94 Find out more about lgrass94
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  • information about late onset hcm hocm

    Evening members,

    I am a very big hcm/hocm worrier, and some of the symptoms i have and how i may develop it in the future ( yes i know i shouldnt worry about what i have no control of ). Ive had an echo, ecg's, treadmill test etc and it was all ok even though i still have the symptoms that led me there in the first place. What concerns me is how on occasion, you come across a story of a 30/32/34 year old runner/jogger having a cardiac arrest due to HCM. In most cases its said they had no signs/symptoms, hence not going to get checked for anything like HCM. Does that mean that IF these individuals would of been screened aged 21/22 years old, it would of shown the beginning of a slightly enlarged heart, and then triggered a whole set of tests which would of revealed it? I worry so much about this as im scared from the age i had my echo, to the next 5 or 6 years it may still develop. Ive been told by my E.P i do not need an echocardiogram again now. But surely late onset contradicts that? My e.p said IF and a big IF you did somehow develop a later onset of HCM, then it wouldn't just progress suddenly from age 23 - 25 and kill you. It takes a long long time for the heart to start to thicken if it didn't through puberty. Is he right?

    Thanks guys

    Liam

  • #2
    Hi Liam,
    I know you're very concerned about this, since you've asked similar questions on the Facebook group. Your doctor is right: HCM doesn't occur with sudden onset. To use myself as an example, I wasn't diagnosed with HCM until I was 47, but looking back, I had symptoms as early as about 20. And when I was first diagnosed, I really wasn't badly obstructed.

    You've had a number of tests, none of which suggest that you have HCM. I don't think it's likely that you're going to find still another test that says that you do. Perhaps your symptoms have a different cause.

    Gordon
    Myectomy on Feb. 5, 2007.

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    • #3
      Hi again gordon

      Thanks for writing to me again. Do you mind me asking, did you not have any tests for it back in your 20s and 30s? Do you think they would of seen it/? I find it somewhat abnormal that someone wouldnt at least have an ECG either routinely or by chance in a 10 - 15 year period though. Do you mind me asking, is your situation a result of genetic or high blood pressure?

      Thanks, Liam

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      • #4
        When I was in my 20s and 30s the diagnosis just barely existed, and it was on the radar of even fewer cardiologists than today. Echos barely existed. I'm not THAT old, but it's important to understand that 40, or even 20, years ago, we didn't have the knowledge or the diagnostic capability that we have today. I can't speculate as to whether someone might have found my HCM if they'd looked at a modern echo.

        It's not at all unusual for people not to have ECGs. My sister had her first one just a couple of years ago. Many docs just don't normally do them, and if that's your doc, unless someone's looking for heart issues, they won't have ECG's.

        High blood pressure causes hypertrophy, but not HCM as such. In other words, that hypertrophy is a different beast than HCM.

        Gordon

        Myectomy on Feb. 5, 2007.

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        • #5
          I understand, so they probably hadn't really heard of it at that point and didn't think it was that common perhaps. I must say my auntie hasn't been to the dr's since 2003/2004, so i do see how its possible to not get detected, but to me as an individual, it just seems abnormal of my auntie to do so. I suppose i have just had a few too many as i have mental health problems and i usually am in fear of having a heart condition. Lets say your one of the unfortunate ones to have a NORMAL ecg with HCM/HOCM, will the dr make referral due to the symptoms or are they likely to dismiss it do you think?

          Thank you gordon

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