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Camzyos Side Effects

Hypertrophic Cardiomyopathy (HCM) | Last Active: Dec 14 9:50am | Replies (16)

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@karukgirl

http://mayocl.in/1mtmR63
Hello @holly1275, and welcome to Mayo Connect. I'm so glad you found this group. It must be disheartening to not be able to tolerate Camzyos. It does not work for everyone, and sadly, you sound like you are in that category. I have posted a link to use to self refer. @manuelpo also gave you some good information. There is a tab on the right side of your screen that also shows you how to Request and Appointment.
Mayo Clinic in Rochester is home to the top cardiologists in the world for treating HCM and HOCM.
I traveled from far northern California to Mayo Rochester for my HOCM, and ended up having open heart surgery. It changed my life so much and I have so much appreciation for their expertise.
I was referred to Mayo by my cardiologist who had no clue what I had. He had diagnosed me with five different heart conditions. It was not until I got to Mayo Clinic I knew what I actually had. Have you asked your doctor to be referred to Mayo Clinic Rochester? If you are not comfortable talking to him any longer, I understand that. I was so discouraged by mine too. But he did refer me, so it doesn't hurt to ask. If you are not feeling like you want to do that, have you thought of asking your family practitioner to refer you? You don't need a doctor to be seen, but I think it does help a little. It is so important that your cardiologist knows how to treat HOCM, and you should not feel embarrassed or uncomfortable to ask him to refer you. It's your life!

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Replies to "http://mayocl.in/1mtmR63 Hello @holly1275, and welcome to Mayo Connect. I'm so glad you found this group. It..."

Hi
Thank you for the information, I will look into this on Monday, and hope to get a appointment.
I am see a cardiologist at a teaching hospital that supposedly, he is a expertise in the field of heart transplant and Hypertrophic Cardiomyopathy.
But he won't listen to what I have to say it's basically he refer me to other patients.
When I asked him about the side effects of Camzyos, he said none of his patients have had any reactions from it. I thought to myself I am not his other patients I guess I was so shocked I couldn't say anything ..
Then he told me if I was having side effects then stop taking the Camzyos, then he said well what do you want me to do.
Every side effect he said was not related to Hypertrophic Cardiomyopathy it must be something else.
I was dizzy headaches trouble breathing sharp pain in my chest joint pain.
I basically was trying to ask about the side effects.
So mad and disgusted I thought he was better than that.
I was referred to the hospital by my original cardiologist I saw at the hospital and his office when I was originally diagnosed in Dec.
He was the one who said he couldn't do anything more for me .
Thank you again for your kind word.
I will surely look into Mayo Clinic On Monday
God Bless And Thank You