Any on here have hcm and been diagnosed with Al Amyloidisis

Posted by tollie @tollie, Jun 26, 2023

I was diagnosed with HOCM in Nov 2013 sepatal myectomy Jan14 2014 in 2020 thing started acting back up and have continued to get worse sod dizzy fatigued heart going crazy all came back nothing has improved much since. 2023 thing changed hands an feet going numb hr going from 50-190 severe fatigue then all my blood work started get off my Kappa light chains are high 50.1 Dr said that Amyloidisis can mimic hcm and go undiagnosed. Everything is pointing towards AL amyloidisis if you had any experince in this and can help me out in what to ask the Dr it would be great

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KEITH | @manning2000 | Jul 3, 2023

I could say the same thing. I was misdiagnosed. Hospitalized in Feb for 8 days. New diagnosis through radiological test proved Amyloidosis. Taken off Camyos for HCM and started Vyndamax. Now on a no salt-low sugar diet. Lost over 30lbs and sticking to IT. Developed problems with circulation in one leg. Need further testing. Possible stent ext. may be needed. Get very tired just walking to mailbox. Slightly dizzy all the time. My prognosis doesn’t look too good. With God’s help, I’ll keep fighting. Blessings, KMC