1. < Hypertrophic Cardiomyopathy (HCM)
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Could it be HCM?

Posted by cnow @cnow, Aug 11 1:39pm

Just got my echo results here at Mayo. There were findings that may be HCM. I addition there were episodes recorded on my holster monitor. I am so relieved something has been found. Not sure how significant or severe it is but it’s something. Meet with cardiologist in the morning. I do not want to treat my symptoms, I want it fixed! For those of you that have HCM how was it handled once diagnosed?

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walkinggirl | @walkinggirl | Aug 15 9:02am
In reply to @cnow "I wore them because neurology then cardiology ordered those tests. I started this journey with nephrology..." + (show)
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I wore them because neurology then cardiology ordered those tests. I started this journey with nephrology hypertension because I had two TIAs in July. They did a series of test then sent me to neurology who did tests that resulted in me having to say into this week for cardiology tests and assessments. And still nothing. Upon reading the clinical notes from cardiology it seems that the only reason he ordered the stress test is to insure me that I’m okay

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As you probably know, the Holter measures heartbeats. It detects slow/fast rates as well as arrythmias and can show things that EKGs cannot or miss. @whidbey suggested an echocardiogram and stress test, but it seems you already did that. Keep asking questions!

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ebony3 | @ebony3 | Aug 24 10:38am

I was diagnosed with OHCM after a heart murmur was heard. Started on Metoprolol and didn't tolerate that very well so was started on Verapamil and increased to 240mg. This did help with the myopathy, but not enough to satisfy the cardiology team, so now am on Camzyos.
Have an echocardiogram this week and am trusting it shows improvement..

God bless you as you travel this road.

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Lisa Lucier, Moderator | @lisalucier | Sep 30 10:21am
In reply to @cnow "I wore them because neurology then cardiology ordered those tests. I started this journey with nephrology..." + (show)
Profile picture for cnow @cnow

I wore them because neurology then cardiology ordered those tests. I started this journey with nephrology hypertension because I had two TIAs in July. They did a series of test then sent me to neurology who did tests that resulted in me having to say into this week for cardiology tests and assessments. And still nothing. Upon reading the clinical notes from cardiology it seems that the only reason he ordered the stress test is to insure me that I’m okay

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@cnow - wondering how you are doing lately?

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jenywilliams | @jenywilliams | Oct 1 8:37am

Once diagnosed , I started with. Camzyos the lowest dose. Immediately my breathing a d synptoms improved. With continued monitoring and adjustments for me I take the highest dose. Not perfect but I'm staple and my heart behaves. This drug works differently for each person, but worth a try in my opioion. Grzteful and going on

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bilingual84 | @bilingual84 | Oct 2 4:49am

Hi @cnow ! I am glad you finally have some answers, I know that was important for me too in the beginning.
For me things developed differently. My GP heard a murmur 4 years ago (I am 41 now) and sent me to a “good” cardiologist. Who then proceeded to treat me with Concor (beta blocker) for two years, thinking I had a bicuspid valve. Thank God she at least had enough sense to send me to another cardiologist, who specialises in HCM and then he finally diagnosed me with OHCM. This was last year. He put me on Camzyos in May of this year and has now increased my dose from 5mg to 10mg, which took care of my obstruction, meaning I still have HCM but with no obstruction. I am still on beta blockers and Camzyos and he is now considering putting me in a program where I would slowly come off of beta blockers and stay only on Camzyos. It is supposed to work even better that way. We will see.
I hope you get all the answers and the right treatment. Just ask as many questions as you can and try not to stress too much about what will be. It is a life adjustment living with HCM, but it is manageable and you can lead a pretty normal life. All the best to you!

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