Does Anyone Else Have Balance Issues?

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?

posted 10 days ago

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Can It Be Detected In An Echo Cardio Gram?

posted about 1 year ago

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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!

posted about 1 year ago

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Anyone On Vyndamax 61 Mg?

How long? What was the benchmark? Have you been retested to see your effectiveness of this drug?

posted 12 months ago

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Galparrott I have seen you mention that you have wild type TTR. Tegsedi is designed to stop the progression of the polyneuropathy associated with hATTR. I do know several patients that are now on both… read more

posted 12 months ago

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Covid 4th Shot

I am seeing people recommending a 4th shot - Has anyone else hearing this and what do you think?

posted 6 months ago

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I get weekly immune therapy thus I’m pretty protected. But still am very cautious. I do have 2 Pfizer shots (made no antibodies) they come weekly in HIZENTRA!

posted 5 months ago

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