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Colleen Young, Connect Director avatar

HCM-ers: Introduce yourself or just say hi

Hypertrophic Cardiomyopathy (HCM) | Last Active: 15 hours ago | Replies (1163)
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Profile picture for pamela47 @pamela47

Hi. I've waited 6 years for a diagnosis, as my symptoms got worse and worse, in spite of many ED visits and cardiologists and tests. I have finally found a cardiologist who used the right tests and diagnosed me with HOCM. I was very disabled by then and saw my condition was noted as "severe HOCM" in one of the referral forms. I started mavacamten 2 weeks ago, and I am already seeing small gains. A long way to go, but I am hopeful

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Replies to "Hi. I've waited 6 years for a diagnosis, as my symptoms got worse and worse, in..."
Debra, Volunteer Mentor | @karukgirl | Feb 24 8:00pm

Hello @pamela47, and welcome to Mayo Clinic Connect!
I'm so glad you found this online community.
What a crazy story you have! How fortunate you now know what you have, but how frustrating it must have been to finally get the diagnosis and treatment.
I can identify with you, as my story is similar. I was misdiagnosed with four or five different heart conditions over about five years. By the time I got my third opinion at the Mayo Clinic, my heart was failing and I was told I needed open heart surgery! I too had severe LVOT obstruction and fell through the cracks in my local town.
I'm glad the Camzyos is helping you. Have you had a chance to read any of the Camzyos group's stories? Here is a link to those brave folks:
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Are you being seen by a cardiologist who is well trained in HOCM (Hypertrophic Obstructive Cardiomyopathy)?
Have you had a second opinion?

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