Not knowing where you live, I will just comment on how I established my team of doctors. Once my family doctor realized that I had a problem, he linked me to a lung doctor and a liver doctor. Lung doc had me scheduled out about 2 months, until family doc stepped and persuaded lung doc to see me soon. (Family doc was treating lung doc's children.) Then perhaps a month later he linked me to a kidney doc and a blood/cancer doc. At this point there was no diagnosis. Kidney doc ordered a kidney biopsy where my AL amyloidosis was discovered. Then with such discovery, blood/cancer doctor linked me to a doctor/friend specializing in amyloidosis at Emory - Atlanta who then directed my program. Most difficult was finding a heart doctor (cardiologist) specializing in amyloidosis--found a couple but their schedule was full. Two months later we (my wife) found a heart doc who specialized in amyloidosis, completing my doctor team.
Timing, all this year (2023): discovered AL amyloidosis early January, met with Emory doctor about a week later (some strings were pulled for this), started chem treatments end of January.
Family doc, lung doc, kidney doc, blood/cancer doc all in my home town of Carrollton, Ga. Heart/amyloidosis doc in neighboring town. And fortunately for me, infusion center where I received my chemotherapy treatments is about 15 minutes from my home. (My apologies for not using appropriate titles for my doctors.)
The quick scheduling was primarily thanks to a cycling friend with stage 4 lung cancer who has gotten to know and is friends with top docs at Emory--he passed my 'scheduling plight' on to his doc friends and I had an appointment within a week with the Emory doctor who is now directing my program. vern
Where are you located? Perhaps someone in or near your area can direct you to centre that specializes in Amyloidosis.
I am the University of Pennsylvania Amyloidosis Center. I see Dr. Piretti. She and her staff are amazing
Ask your cardiologist.
Where do you live? I go to the specialist where I live in Palatine Illinois. Your cardiologist should be able to advise.
All the best. Peter