HCM-ers: Introduce yourself or just say hi

Hello @dmarino4900 and welcome to Mayo Clinic Connect.
That is quite a story you shared here on Connect, no wonder you are frustrated and want to give up! I am so glad to hear that you already have done the most important thing you can...be your own best advocate.
Mayo Connect is all about patients helping each other and sharing stories and information. Have you had a chance to read any of the Camzyos groups stories? Here is the link to that:
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
I have found it is very typical for specialist to only give advice in their realm of specialty as this is their wheelhouse, so to speak. They are not comfortable offering treatment or advice in areas they don't know. You wouldn't want an electrician try to fix your plumbing and you wouldn't want a plumber to try and fix your ceiling fan! If you know what I mean...
Sometimes you have to go to more than one doctor to get to the real problem, and it certainly can be frustrating for sure. But it sounds like now you do know what is going on and it may take time to get all this under control. I'm sorry you have had this experience.
@jaymaysea is a Camzyos champion here on Connect and if you have not had a chance, take a look at some of her posts...she has had an interesting journey with HOCM (hypertrophic obstructive cardiomyopathy) and Camzyos and has a wonderful outlook about going through trials.
Are you feeling any better now? Are you able to be active like walking or able to do something you love?

I am 72 years old. About a year ago found out I had obstructive hypertrophic cardiomyopathy. A severe case. I am seeing a Dr who specializes in this. Had to go through a lot, in order to get approved for Camzyos. It is not an easy task to do. Especially when you are really sick. Finally started taking In February 2024. It was not easy getting the medicine. The support team and down to the doctors do not communicate. You have to be your own advocate. At first I felt better. But I started to get side effects. From headaches, nervousness, shaking, to my muscles becoming very weak and painful. Had trouble breathing, coughing I feel like I want to give up. Was told not the Camzyos. Went through many blood test and different doctors to find out I now have hyperthyroidism and possible Graves’ disease. I had been on thyroid medicine , since I was fifty. No problem until 3 months ago. Now this. Was taken off of thyroid medicine,still the same. I feel like I am a piece of meat on an assembly line. Doctors do not listen to there patients. Only will discuss what there specialty is. The pharmaceutical company only cares about 1 thing money. Shame on them. Be honest with the patients , work with them. The results came be better. I am not knocking the drug because there are results but also side effects no one once to talk about.

The two treatments, other than meds, that I was told about were either surgery or non invasive alcohol injection via an artery. Have you had either of those? I was told I wasn't a candidate for the alcohol treatment but surgery a year and a half ago seems to have worked for me. I'm hoping that result lasts.

I was diagnosed with HCM in 2019. I've never heard the term Apical but when I look it up it sounds like the same way my condition was described. I had surgery in March 2023.

Hi Val, it seems we have a few things in common. I have Apical HCM & live in England

Hi,
I regularly use Online Mayo Clinic for my health & medical info.
I have a long standing diagnosis with Apical HCM. I am highly symptomatic despite extensive treatments.

Hi back at you @superkhal, welcome to Mayo Connect. What brings you to this forum? Do you have Hypertrophic Cardiomyopathy? If you do, have you had a chance to read the stories here?

Hi everyone

My name is Don I live in the state of New Jersey just started Kim zoyas I'm in my fourth day of taking the prescription no side effects yet go back in 4 weeks for my first electrocardiogram will keep you posted thank you

Hmm...I had not thought of that. You're so smart!
I actually have an appointment coming up in October in Rochester. Like you said, we have both experienced the Mayo Clinic and know deep down in our little hypertrophic hearts they are the best.
I've recently noticed some symptoms that I didn't give much thought about but when the anesthesiologist heard them he said no way... surgery not happening.
I tried to convince him that these are just typical for HCM after septal myectomy. It caused me to reach out to Cardiology and Dr. Ommen said they are not typical and I need to be evaluated.
Here we go again! The rock and the hard spot. I have no confidence in my local cardiologist, I don't even see him...I see one of his PAs. And I know they are not savvy with HOCM/HCM.
Not like the Mayo!
So here I am, in far, far Northern California, not near any COEs, and contemplating if I should postpone my knee surgery until after I am seen by Mayo. I honestly know the local guys will say I'm fine...but I don't know if they know, you know??