1. < Hypertrophic Cardiomyopathy (HCM)

Cardiologist says not Hcm

Posted by drumsace @drumsace, Dec 9, 2023

My cardiologist ordered A echo of my heart because A CT scan showed an enlarged left septal muscle and the echo came back showing A moderate to severe enlargement of 1.64cm but my cardiologist says even though I am very sympathetic that it’s not HCM because she doesn’t see any obstruction and is blaming my fainting, chest pain, and shortness of breath on my blood pressure medication 💊? So I guess I need a second or third opinion?

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Mentor
Debra, Volunteer Mentor | @karukgirl | Dec 9, 2023

Hi @drumsace, you ask a very good question, and I believe you answered it yourself!
I do not know if your cardiologist is an expert in HCM or HOCM, however, if you feel like getting a second opinion, you should listen to your inner voice. I was misdiagnosed by my own cardiologist four times with four different heart conditions. It took getting a second, followed by a third opinion to be correctly diagnosed with Hypertrophic Cardiomyopathy, and not only that it was obstructed. If I had not listened to my inner voice, I have no idea what may have happened.
It's not uncommon that HCM is missed. I would encourage you to listen to yourself and look for another set of eyes to take a look at your echo. This way you will have more information and that is never a bad thing! Being your own advocate is the most important thing you can do for yourself. Are you near a Center of Excellence (COE)? These are spread throughout the country, with Mayo being one of them and Mayo is a COE for all things hypertrophic cardiomyopathy. Do your research, learn as much as you can, and then being informed make the best decision for your own healthcare. Are you able to find another cardiologist nearby that specializes in HCM?

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1 reply
drumsace | @drumsace | Dec 9, 2023

Yes the first of the year I will have new insurance and will have A new cardiologist and am looking for A HCM center that will take my insurance MAYO won’t. I have sick node syndrome and have A pacemaker

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KEITH | @manning2000 | Dec 11, 2023

I was given a heart valve to slow blood flow. Didn’t help! Then told I had HCM. Went on CAMYZOS for five months. Got worse. New Dr. found thru tests, that I really have “Amylodosis”, the “Wild” type. I am now on Vandamax. Amylodosis is not easily recognized by even experienced doctors. Good luck, KMC

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drumsace | @drumsace | Dec 11, 2023

Thanks that’s very interesting because I have sick node syndrome witch can be caused by Amylodosis and. Other similar symptoms will definitely bring it up to my next Cardiologist

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boatsforlife | @boatsforlife | Dec 11, 2023

@drumsace, I had a similar experience 5 years ago. I had two doctors look at my echo and instantly say HCM. It was textbook. Then a specialist decided it was not HCM and his response to "what should I look for then?" was (and I quote) "I dunno man." Those were my first, second and third opinions. Fast forward five years and guess what - a new echo, HCM diagnosis again. Then Camzyos which instantly made everything better. I feel awful for the folks who have not responded well on Camzyos - to have it hold such promise and then not work for them - it must be so discouraging. Best of luck with the next steps, whatever they may be.

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1 reply
drumsace | @drumsace | Dec 12, 2023

Thanks ya it’s very frustrating

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Judyinjeans. | @judyingenes | Jan 18 8:12am

I have been reading this thread with interest as some of it applies to me. As I read I am thinking...To various posters in this and other threads...How are you getting all these tests done? Who is paying for all the second, third etc. opinions? I am amazed at how much testing some of you have been put through! And offered procedures like back injections?...that I mentioned once and it was dismissed as not being anything that last for any length of time.
My HMO is supposed to be the most preferred and best rated in CA and I was not offered ANY of the tests that I am reading about. I didn't know about them to ask for them: have been through the routine, general testing, and do have a Cardiologist and a Neurologist as well as my primary.
I know every case is different and all of that, but I'm going to have to go and have a good talk with my primary doctor armed with notes from this thread.

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deanna529 | @deanna529 | Jan 24 10:17am
In reply to @karukgirl "Hi @drumsace, you ask a very good question, and I believe you answered it yourself! I..." + (show)
@karukgirl

Hi @drumsace, you ask a very good question, and I believe you answered it yourself!
I do not know if your cardiologist is an expert in HCM or HOCM, however, if you feel like getting a second opinion, you should listen to your inner voice. I was misdiagnosed by my own cardiologist four times with four different heart conditions. It took getting a second, followed by a third opinion to be correctly diagnosed with Hypertrophic Cardiomyopathy, and not only that it was obstructed. If I had not listened to my inner voice, I have no idea what may have happened.
It's not uncommon that HCM is missed. I would encourage you to listen to yourself and look for another set of eyes to take a look at your echo. This way you will have more information and that is never a bad thing! Being your own advocate is the most important thing you can do for yourself. Are you near a Center of Excellence (COE)? These are spread throughout the country, with Mayo being one of them and Mayo is a COE for all things hypertrophic cardiomyopathy. Do your research, learn as much as you can, and then being informed make the best decision for your own healthcare. Are you able to find another cardiologist nearby that specializes in HCM?

Jump to this post

May I make a suggestion? My 1st echo at a local hospital did not show HOCM. My 2nd opinion cardiologist heard it during an exam. He ordered another echo right in his office. It showed that I had an obstruction. So, the point being....not every echo shows everything, and also depends on who is reading it. 🙂

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katiekins | @katiekins | Jan 25 11:58am
In reply to @boatsforlife "@drumsace, I had a similar experience 5 years ago. I had two doctors look at my..." + (show)
@boatsforlife

@drumsace, I had a similar experience 5 years ago. I had two doctors look at my echo and instantly say HCM. It was textbook. Then a specialist decided it was not HCM and his response to "what should I look for then?" was (and I quote) "I dunno man." Those were my first, second and third opinions. Fast forward five years and guess what - a new echo, HCM diagnosis again. Then Camzyos which instantly made everything better. I feel awful for the folks who have not responded well on Camzyos - to have it hold such promise and then not work for them - it must be so discouraging. Best of luck with the next steps, whatever they may be.

Jump to this post

Started Camzyos on 9th January after all the tests etc….Felt absolutely amazing for the first 5 days Then by last Saturday terrible headaches/migraine, blurry eyesight and jaw ache with throbbing in right arm. Stopped this Tuesday (3 days ago) as advised by my team.,So full of disappointment I had such high hopes for this drug. Wishing you all well in your journey as for some it really is the wonder drug. Keep well and safe to all. xx

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