My diagnosis is wild type CM with poly neuropathy Tafamadis is main drug along with associated heart drugs my concern is the 4kg weight loss over the last few months I live in Crete so I eat a traditional Mediterranean diet
Answer Summary
Members living with wild-type ATTR cardiac amyloidosis connected over shared concerns about unexplained weight loss, with experiences ranging... Read more
I too have Wild Style with Heart involvement and advanced Polyneuropathy. The amyloids continue to establish themselves in other organs. Weight loss: I lost over 50lbs in the first 4 months. At this point i force myself to eat quality foods each day as my unwanted weight loss continues.
My Signiant mobility problems seem to be my major lifestyle concern. My common daily actives have changed dramatically. I try to walk 2k steps each day and grossly cut back on driving. Reading and talking with friends are my most satisfying activies once the PT people leave my home.
Good luck with your weight loss.
short of breath
maybe. or have you been evaluated to determine if Heart Failure? Sounds like you need to be on water pills.
HUMMM I have attr cardiac amyloidosis wild form and have put on about 20 lbs it is fluid build up in abdomen that makes me look 7 months pregnant and feels like it too.
Thanks for your reply sounds like we are similar, I keep my self busy in our olive trees and in the orchard but after 4/5 hours and I’m tired and retire to the shade and read n relax with a beer 😎