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Looking for guidance...possible amyloidosis?
Blood Cancers & Disorders | Last Active: Dec 24, 2025 | Replies (6)Comment receiving replies
I was dx with Amyloidosis of the ATTR-CM wild type in 2022. The standard of care test is a nuclear test called a PYP-99. They inject an iodine radioactive thing,lie on your back..no tube..yeah.. for about 45.min,with your arms over your head in a cradle. Not bad. The amyloidosis shows up green in the scan and shows in the heart,ribs, chest areas. Then,if positive, you can get a free genetic mouth swab test to rule out inherited type. Please read about the 4 main types in a good research on Mayo, Cleveland clinic, you tube info,etc. It's IMPERATIVE to get dx quickly and Quickly get on the new rxs.
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@annie14 thank you.
What you’ve described is incredibly valuable and could help many others facing a similar situation.
Amyloidosis is a rare group of diseases where abnormal, misfolded proteins (amyloid) clump together and build up in organs like the heart, kidneys, liver, and nerves, disrupting their normal function and causing serious damage or failure. It can be hereditary, acquired, or linked to chronic inflammation, with symptoms varying by affected organs, including fatigue, swelling, shortness of breath, and digestive issues.