HOCM specialist

[ebstolz]

Hi! It's been a while since I last posted. This November will be time for my 3 year check up to see if I have aquired HOCM like my Dad. I turn 31 in August. I can still get it, right? Also, I live in Los Alamos, NM. Any specialists in NM? Can I see a local cardiologist for an echo? Do I need to wait until November or can I go now? Thanks in advance and hope all is well for everyone else!

[Reenie]

Re: HOCM specialist

Hi Erica. Yes, you can still develop HCM. Just keep checking every 5 years or so. I don't think you need to wait to do it. You can have any cardiologist read the echo, as long as you're sure he knows the family history and knows what he's looking for. Good luck.

Reenie

[ebstolz]

Re: HOCM specialist

Thanks. Should I wait 2 more years then? It will only be 3 years in November!

[Reenie]

Re: HOCM specialist

I would say it's up to you if you wait another 2 years or not. If you have any inkling that you might have HCM, then go now. Otherwise, use your instincts and go by what your insurance will pay for.

Reenie

[ebstolz]

Re: HOCM specialist

I have an abundance of information but would like to hear from someone else what the early symptoms would be! And how would you know it was HCM and not something else? Thanks again.

[Burton Borrok]

Re: HOCM specialist

Hi E.B.,
I don’t think there is any one thing or set of things which would lead somebody to say, “Yup, that’s HCM all right.” There are a number of ‘classic’ symptoms which are HCM related, but they could mean other things too. The real diagnostic tool is the ECHO and the EKG along with it – although the ECHO is the number one tool – that’s why it is strongly suggested periodically when family members have the condition.

Symptoms can vary widely, but some are more prevalent then others. I guess the most common is shortness of breath ‘SOB’ under stress, exercise, heat and/or humidity. It is also the most commonly passed off as being ‘out of shape’. Another common one is a tightening of your chest – frequently considered gas, indigestion, muscle strain, or more frighteningly, the start of some sort of cardiac problem or attack.

Then of course there’s a ‘fluttering’ or ‘flop’ or a short sharp pain in the heart, back, arms or elsewhere - but then this is often mistaken for a muscle spasm, and these are more often encountered some time after the diagnoses.

With me, and I went undiagnosed for years, I found it difficult keeping up with my buddies when walking back from lunch. When walking between two buildings on a warm sunny day I would want to stop to calm down and catch my breath. Walking up a grade would have me huffing and puffing. I had difficulty standing without leaning on something, and would get off my feet as soon as possible. Even back in the army in the early fifties when I had to double time my heart would beat so hard I thought it would blow the top of my head off – but I thought everybody had that.

For years through middle age I would feel like dozing off after lunch, but I thought that was caused by my lousy sleeping habits – I was prone to burning my candle at both ends. As the years rolled by this got worse, and now I also suspect the medications I’m on. It is amazing how people can find all kinds of excuses for the way they feel.

So my friend, if you have any of these symptoms, or others that you would normally dismiss, having HCM in the family, it would be an indication to go have an ECHO. It may be nothing, but then again - - - it pays to be prudent. At your age and beyond, it would be a good idea to get an ECHO every five years – symptoms or not.

Hope this answered your questions.
Burt

[Sarah]

Re: HOCM specialist

Burt is, as always, right on the money.

There isn't any hard and fast rule about when to get an echo unless you are having symptoms, then obviously you would high-tail to the doctor to get one. 3 years through the 30s isn't unreasonable and will probably ease your mind.

One big giveaway is if you have cardiac symptoms that don't seem to be related to any activity or catalyst --if you had tachycardia while watching tv, say, or chest pain just walking down the street. That would probably merit getting checked out if that happened regularly.

take care,

S

[felixdacat]

Re: HOCM specialist

Erica,

There is another option that you and your Dad may want to research.
Go to the following thread:
http://www.4hcm.org/phpBB2/viewtopic.php?t=3227
There is a good chance that you can have genetic testing done. If they are able to isolate your dads mutation, they can then look at you. If they find the mutation in you, then you will still have to be regularly tested for the expression of HCM. If they don't find your dads mutation in you, then you will not develop HCM.

[Burton Borrok]

Re: HOCM specialist

Hi Felix,
It’s great to see you and Sandy continue to post to the board. Hope you are continuing to improve and can now lift your car and change a tire without needing a jack. Of course personally I would really appreciate you and Sandy posting your avatars, so we can see what you look like. More and more people are putting up their pictures, and it’s really nice to see them. We’re more and more a community of friends.

About the genetic testing for HCM – What you say is the hope and goal of the researchers, and possibly some day to also correct the mutation when found, stopping the disease in its tracks. Unfortunately we are a long way from being there yet. There is much yet to learn about these genes – does the exact same mutation always follow through a family, or are there variations on a theme? – Can there be combinations of gene variations which cause different people to have different symptoms while all have HCM in the same family? – Why do some people inherit the gene irregularity while others don’t? The list goes on and on. The most we can do today is to help the researchers as best we can, and hope someday this cock-a-mammy condition can be cured and cease to cause us concern – if you ‘C’ what I mean.
Burt