Hi JonP!
With AL Amyloidosis, you should be seeing a hematologist/oncologist who treat amyloid patients, center of excellence. Where are you located?

Hello JonP. My spouse started his journey with AL Amyloidosis the same way. He was denied an operation because he had a 'significant' heart murmur. This was at the same time that he was having difficulty walking because of nephropathy in his feet. All to say, two years later (march 2023), he had heart failure and rushed to Emergency. In Emergency a 'sharp' nurse advised the on call cardiologist that 'this patient has a number of other issues'. The cardiologist came to see my spouse and told us he suspected Al Amyloidosis. He had 12 of the known symptoms for Amyloidosis. The Cardiologist ordered a bone marrow biopsy and a fat pad biopsy (apparently two tests that will confirm Amyloidosis). He was spot on. My spouse is now in chemo therapy and in remission for the production of the amyloid proteins. We just have to deal with the effects of the bad protein already in his body. Get tested and into a treatment plan. Read the articles on this forum and educate yourself. Catch this disease before it progresses further. Best wishes.