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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: Nov 28 11:57am | Replies (877)Comment receiving replies
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.
Replies to "I am 72 years old. About a year ago found out I had obstructive hypertrophic cardiomyopathy...."
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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?