Clarification On Genetic Testing

I belong to the HCMA forum for Hypertrophic Cardiomyopathy. I received some replies to a post I made back when I got my test results.

Did you know what your Dad's HCM gene was? If not, then your doctor cannot know that you didn't inherit this from your father and that you can't pass it along. In order for him to make this statement, your Dad would have to have known that he had a particular genetic mutation, and then if your sample didn't match his mutation, then you might still have a different HCM mutation.

I think that your doctor is misunderstanding the report. What it probably said is that you don't have any currently identified gene that causes HCM. If that is true, you might still have a gene that has not been identified yet as a gene that causes HCM. Nevertheless, you could still pass along a gene that has not been identified.
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About 30% of the time the genetic testing for HCM will not turn up with a known mutation. That doesn't mean you don't have a familial form of HCM, just that it is not known. It also means that you could pass it on to your children, so an interpretation of the results of the genetic testing by somewhat who understands this is important.
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We can only know if a gene you have is a copy of your father's by looking at your father's genes. Unless there is some tissue of his, or he was tested in the past, this didn't happen. If they reported -- as seems likely -- that you don't have any of the known mutations that tend to cause HCM, that doesn't mean there's no genetic basis for your disease, only that the genetic basis isn't known.
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I had posted the results of the genes tested and the test interpretations and got this reply:

Yes, this says that you don't have any of the known variants (among the three genes they tested) that tend to cause HCM. There are other genes that have variants that are known to cause HCM. But even so, about 40% of HCM patients don't have any of the currently known variants. That means that (a) you have a lot of company, and (b) there is much about the pathways that lead to symptomatic HCM that still isn't understood. That said, you should know that there are actually very few diseases that have as well-known and strong a genetic basis as HCM.

Put differently: the "genetic tests" for HCM just ask a very simple question, namely, does this person have a mutation that we already know tends to cause HCM? If the answer is no, it doesn't say a thing about whether the person has a mutation somewhere else in the genome that tends to cause HCM.

Genetic Testing For Hypertrophic Cardiomyopathy

This morning I went with my eldest daughter to take her three children to their pediatric cardiologist for their annual EKG and Echocardiograms. They need to be tested because it's a possibility I may have passed a gene variance ( mutation) on to my children and their offspring for Hypertrophic Cardiomyopathy, since this heart disease is inherited.
Jordyn 9, shows no signs. Jonah 5, EKG showed a probable thickening of his heart ( from the spikes in the EKG) but the Echo shows that his heart is fine. Ayden 2, has a heart murmur but she is also fine. Their Dr. is encouraging us to have the Genetic testing done so we are looking into it.
I am termed as the 'index' since I already have HCM. I'm the one who will have my blood tested to see if I'm carrying the mutated gene. 75% of the time it can be identified. Once this happens, then my children, grandchildren and my siblings can also have a blood test done to see if they carry this gene too. If they don't they will never get HCM. If they do, then they will need periodic Echo's. My own HCM didn't show up until my late 40's.
The test cost around $5,000. We're going to find out if my health insurance will pay for this test. If so, I would be required to pay 15% - or meet my yearly deductible. I'm keeping my fingers crossed it's only the deductible.