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HOCM w/SAM

Hypertrophic Cardiomyopathy (HCM) | Last Active: 1 hour ago | Replies (15)

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Hi @mrsbubbles and welcome!

I was misdiagnosed for 4 years from age 37 to 41. Because I was “so young” they tried to explain my symptoms away with anxiety and my weight gain. Finally my GP heard a murmur and sent me to a local cardiologist, who treated me for a faulty valve for two years. Finally I was referred to a HCM specialist, who confirmed I have HCM with obstruction and he put me on Camzyos. That was almost a year ago on the 6th of May. Camzyos works for me and my obstruction is gone, so are my symptoms (before I could barely shower I had such bad SOB).
I don’t know your age and the severity of your HCM, but I do advise you to read up as much as you can on the condition, ask your new cardiologist all the questions you have (even write them down so you don’t forget) and make a decision that is best for you.
In the meantime just breathe and don’t get yourself too worked up, but if you do come here and write 😉
I wish you all the best!

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Replies to "Hi @mrsbubbles and welcome! I was misdiagnosed for 4 years from age 37 to 41. Because..."

@bilingual84 thanks for sharing your story.

I'm in my '60s and when I saw your comment about the shower I said omg I haven't used the shower for years because of this problem (actually new problem = HOCM). It's easier to have a bath because of the SOB and fatigue. Right now my obstruction is resting 60 and my provocation measurement is over 200. So many appointments, so many tests with the pulmonologist even though my lungs are clear. It's baffling.
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