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Just Diagnosed


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  • Just Diagnosed

    [Just Diagnosed]

    Author: Wayne (---.centrelink.gov.au)

    Date: 04-18-02 00:20

    Hi everyone

    I was diagnosed with HOCM 2 weeks ago after 2 years of severe sickness, fatigue & chest pains. I am 25 years old & have been doing serious weight training/body building for around 5 years now - was forced by fatigue to stop at christmas. My doctor believes the weight training has brought on the problem but I would like to know if this would've been an underlying problem that weight training has made worse? I know almost nothing about this condition & would like to know what my doctor should be telling me, as he hasn't told me a great deal yet. All I know is my left Ventricle muscle is huge & the valves are hitting it just after they open, my retraction or refraction rate (which ever is the right term) is 42%, my resting heart rate was around 106bpm - now dropped to around 70 - 80 on the meds. I am currently on Inderal 10 Mg twice daily & will increase to 4 times daily after 2 weeks.I have chest pains that go down my left arm & my hear rate jumps all over the place. The Meds have got the chest pains under control & has improved the fatigue by enormous amounts most of the time except I when I over do the exercise - then I feel like a bus has hit me. I have been told to do light endurance type exercise like swimming laps, light bike riding & easy walking as this will help reverse the condition, is this correct?

    I am concerned that my doctor doesn't know much about this condition & isn't taking it seriously enough. I would like to know how serious this is & should I be seeing a heart specialist about it?


    [Re: Just Diagnosed]

    Author: Glen (---.com)

    Date: 04-18-02 08:48

    Hi Wayne, I was diagnosed 30 years ago at about the same age you were, however I do not have obstruction.

    Definetely you need to go to a cardiologist who knows or specializes in HCM.

    The fact your doctor put you on Inderal says he may not be up to snuff. I am being taken off Inderal after taking it for 30 years because they usually don't prescribe it anymore, there are better beta blockers.

    See my posting I just made.

    Also heavy weight lifting is a no no with HCM.

    If you can tolarate any exercise then it will help the heart but will not reverse the condition, you need to have some testing done before doing exercise.

    Have you had an echo done, a must for determining muscle thickness, where it is and how bad your obstruction is.

    You may have some palpatation/arrhythmia when you say your heart rate jumps all over the place.

    Sounds like you need to search out an HCM specialist in your area.

    Sarah or Lisa can better advise you on that.

    Good luck and stay well.



    [Re: Just Diagnosed]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-19-02 12:16

    Dear Wayne,

    Welcome to the board.

    HCM is almost always genetic. Sometimes a "lone ranger" shows up in a family as a genetic fluke, but most of the time, it runs very high in the family as most strains of HCM are auto-somal dominant (only 1 carrier needed). Has anyone else in your family had any kind of heart trouble? Even if it wasn't called HCM?

    I've never heard that "light exercise" will "reverse" HCM. In fact, I don't know of anything that will reverse it, only ameliorate the symptoms, except there are surgical procedures that remove the extra muscle, which reduces symptoms as well.

    You should definitely hold off on the weight lifting and super strenous work outs untill you see a specialist. Most HCM doesn't get diagnosed until the teens and 20s, so the weight lifting probably didn't cause it, but isn't really helping either. It is an old school myth that all HCM is "athlete's heart."

    Please call the office at 973-983-7429 RIGHT NOW to get the name of an HCM specialist near you (or as close as possible). Only then will you get the level of treatment you require. Inderal is old-school too. It sounds like your doctor is still in the dark ages about HCM, which many are. The HCMA can send him a packet of info, too.

    Keep us posted and take care --no superman activity, if you please. : ) --This is a livable condition with proper treatment, and some lifestyle changes.



    [Re: Just Diagnosed]

    Author: Jake D. (---.monkeys.com)

    Date: 04-22-02 20:33

    Hello Wayne,

    Just a couple of words for you.

    The first thing is don't panic. I was also diagnosed at age 25 and in my case I also had a guy who wasn't able to explain much about the condition to me. For about my first 5 years after diagnosis, I was convinced that this was going to kill me, and that I was living on borrowed time, and that I already had one foot in the grave.

    23 years later, I now know that most of my fears were total rubbish. Yes, HCM is a potentially fatal disease, but no you shouldn't avoid getting married, buying a house, and getting a long term mortgage just because you have it. Look around this board and you'll find a lot of people like myself who have survived a long long time with this and who are doing OK, or mostly OK. So just don't let anything you read scare you too much. Nowadays, there's a whole spectrum of treatments for this, so don't worry and remember that you're not alone.

    Oh yea, and one other thing... if possible get checked to see if you also have atrial fibrillation. I found out very very late that I had this too, in addition to the HCM, and that in fact most of my most annoying symptoms were due to the A-fib and NOT so much to the HCM.

    Good luck and take it easy on the weight lifting.
    NOTE: This is a post from the previous forum message board.