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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 6 days ago | Replies (1227)Comment receiving replies
@hs60marg Welcome to Connect! It seems the discussion has turned to thinking about symptoms of HCM. While none of us planned on having this awful disease, knowing that we do opens a path for treatment and relief. It is quite possible that at least some of your relatives had asymptomatic HCM, many people do. Maybe they were not verbal about some of the symptoms they may have been experiencing. The genetic testing is relatively new, and not all the responsible, naughty genes have been found. Out of 123 that were tested in my DNA in 2022, all were normal, more are discovered as time goes on. It may turn out that HCM is not causing your mild chest tightness, your doctor is thorough and covering all the bases. If you cannot get your cardio MRI before your 6-week absence, may I suggest to at least get an appointment set up. BTW, I never had a cardio MRI until I was at Mayo for my septal myectomy, my diagnosis and monitoring were always done with an echocardiogram. You may wish to ask your doctor why an echocardiogram is not being ordered. Let us know what happens!
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@walkinggirl thanks for your reply. It was good to know your information on the genetic factor! When I was brought out from the cardiac catheterization. The doctor asked for an echocardiogram to be done right there and then. The technician came and did a very thorough one. I think it was from this that he recommended the cardio MRI. I have scheduled that as soon as we get back in the country in late October. all of the test data written up by the doctors is in my portal, but it’s written in highly technical medical terms and I really need someone at the University of Penn to interpret a lot of these results for me. Unfortunately, we are three hours away and they will not do a tela medical call outside the state of Pennsylvania and we are in Delaware. I did find out when making this appointment in A for October from the very helpful lady who made the appointment for the MRI that the doctors would have put in a timeframe that it needed to be done by if they were worried about that no timeframe was listed so I think I’m safe and delaying it. Again, I would like to thank you for your very helpful reply. Dean