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 had the definitive scan called a Cardiac PYP. You’ll probably have to get this at a hospital. Look it up then discuss w cardio!
How long? What was the benchmark? Have you been retested to see your effectiveness of this drug?
I am seeing people recommending a 4th shot - Has anyone else hearing this and what do you think?
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