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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Can We Get Updated Resource Material?

A MyAmyloidosisTeam Member asked a question πŸ’­
Nassau county, NY

Some of the material is from 2021. A lot has advanced since then. Would also like to see new numbers on the overall survival OS rates. We need to know with advanced treatments comes better prognosis.

September 16
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A MyAmyloidosisTeam Member

There’s an increasing amount of literature to search through but I always start with Mayo Clinic.

7 days ago
A MyAmyloidosisTeam Member

The AI employed here is producing muddled content β€” mixing AL and TTR in its answers. Not quite hallucinating, but unreliable.

September 18
A MyAmyloidosisTeam Member

And that was modified in 2022 πŸ™„ Not everything is solved by AI

September 16 (edited)
A MyAmyloidosisTeam Member

Once you obtain a basic understanding of your disease, your best bet is academic journals. If you struggle with statistics and such, there are explainers/primers out there that make it understandable.

6 days ago
A MyAmyloidosisTeam Member

AI is very cunning ... be wary πŸ‘

September 16

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Will The Site Be Putting Up Any New Material In The Resources Section? Some Of The Material Is From 2021… Maybe A Little Outdated πŸ€·πŸ»β€β™€οΈ

A MyAmyloidosisTeam Member asked a question πŸ’­
Nassau county, NY

Hi Dan From Calgary Asking After Taking 10 Mg Of Dex 2 Hours Before Treatment Increases Your Blood Pressure As Mine Seems To Go Up

A MyAmyloidosisTeam Member asked a question πŸ’­
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I Do Not Know What Symptoms Of Amyloidosis Are: I Have AFBIB Too And Often Feel I Have Long Covid. How Can I Judge What Is Going On?

A MyAmyloidosisTeam Member asked a question πŸ’­
Rome, GA
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