Hi I was recently diagnosed with cardiac amyloidosis. Still waiting for type to be determined. Have complained many years of weird symptoms and always told was because of this or that. After having every test under the sun they ran a pyp scan and found amyloids. I have had three mitral valve replacement surgeries over the past 30 years. And have severe peripheral neuropathy of feet, a since of feeling off balance like I just walked off a cruise ship and still swaying. Eye issues, carpal tunnel surgery, brain fog, unexplained weight loss, nausea, loss of taste, extreme teeth sensitivity and more. At this point I am pretty sure it has invaded my PNS and CNS. Feeling really defeated at this point and waiting for cedars Sinai appt in Los Angeles. My heart failure specialist says I need AmVuttra. My question is has anyone had any significant improvement in symptoms once on medication?
