My husband who was diagnosed about a year ago, but who has had symptoms of CATTR for +12years has severe balance issues. Originally they were blamed on vestibular neuritis, but seem to worsen ever more frequently with "bouts" of imbalance and falls. Sometimes there is LOC, other times he is just soooo tired that he falls down. Drs seem to just shake their heads and seem to imply it is a separate issue
Has anyone else ever had inner ear nerve damage attributed to the amyloidosis?

I have be taking Tafamidis since March 2022 with no positive changes. I was thinking that due to my advanced heart failure I may not see any benefit by continuing to take Tafamidis.

I am experiencing daily bouts of nausea, vomiting, diarrhea and extreme drops in blood pressure. For the past 2 months now. I am currently in CHR and have been done with chemo for one month. Didn’t have any of these issues while on treatments. Any thoughts or similar issues out there? I’m just wondering if it’s the Amyloidosis or a result of nerve damage from the chemo? I’ve had bacterial and parasite tests done but no evidence of either. Also had a recent echocardiogram which was normal. No-one… read more

I think the only way to really understand how much Tafamidis works is by comparing the heath thickness before and after, at least 1 year of therapy. Has anyone got this information?

My husband has Al Amyloidosis

I've gotten five different dx from five different specialists. However, none want to put the puzzle together. Most recently, my PC thought I'd had a heart attack-severe shortness of breath, exhaustion, cough, abdominal pain, and chest discomfort. Hospital performed a bunch of tests - stress test was normal and the echo showed mild left wall thickening and mildly enlargement w/grade 1 diastolic dysfunction - the right aortic valve is trileaflet w/sclerosis and mitral valve has calcified annulus… read more