@mustang68,
I may be biased but I do believe the Mayo in Rochester is the leading expert in HCM/HCOM. Dr Steve Ommen is the top of the top for hypertrophic cardiomyopathy and he sets many standards of treatment for this insidious disease.
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
I don't usually post so many links for homework assignments, but thought you may like this one too.
From what you stated...you have seen a lot of specialists.
It must be terribly frustrating to be fine and than suddenly (or what seems sudden) your whole world changes and your life is nothing like it was before.
I know that feeling well!
I must say this, because it is true, your life is yours and you owe it to yourself to learn as much as you can about this condition and if you need yet another opinion, maybe make it with Mayo Clinic?
I saw my local small town cardiologist when I started having more issues. I had a mitral valve prolapse and aortic stenosis. Then I had small vessel disease. Then I had worsening MVP, and finally he diagnosed me with a rare congenital disease called Sub-aortic membrane and I would need open heart surgery right away. And he was going to refer me to our local heart surgeon.
Hmm...so it's rare, eh? How many sub-aortic membrane surgeries has this guy done?
I sought a second opinion outside the area. This guy said I had nothing tremendously wrong with me, but I did have a murmur. Well I can tell you I listened to my body and knew something was terribly wrong.
I did not want open heart surgery in any form, so I went to Cedars-Sinai and was finally correctly diagnosed with HOCM.
Then I went to the Mayo in Rochester. This is all after doing my own research about top COEs (Centers of Excellence) in HCM.
By the time I got to the Mayo, my heart was failing, I could hardly tie my shoes some days and other days be fine, but I still needed open heart surgery.
I am sharing all this because it sounds like you have gone through the proverbial wringer and still feel uncertain. I cannot comment on your current list of conditions, but gosh...it sounds like you need clarification that is 100%!
Mayo Clinic is worth your time to investigate in my opinion. You have so much going on, What do you have to lose?