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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.
July 31, 2025
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Answer Summary

Members discussed the challenges of living with untyped amyloidosis, where the specific protein causing the disease cannot be identified,... Read more

Members discussed the challenges of living with untyped amyloidosis, where the specific protein causing the disease cannot be identified, leaving patients with worsening joint pain and soft tissue symptoms but few treatment options or clear next steps. A member recommended seeking a second opinion at Brigham and Women's Amyloid Center and consulting with a cardiac specialist who might offer referrals for unusual cases, while acknowledging the frustration of navigating a rare presentation. A recurring theme was the importance of seeking specialized care, staying connected with expert centers, and being cautious about relying on AI-generated health information rather than trusted medical studies and patient support organizations.

A MyAmyloidosisTeam Member

Sheldon, that is good to know and consider. I am way behind the times, and don't think I would know the difference between an AI source of info and reliable sources. It's very scary, this new world of AI, especially because all of us need reliable sources of information in every aspect of our lives.
Maryann

August 3, 2025
A MyAmyloidosisTeam Member

AI should not be relied upon for fully accurate or comprehensive answers.

August 2, 2025
A MyAmyloidosisTeam Member

Call Brigham and women’s Amyloid Center ask for Dr Kevin Bersell tell him I referred you .

All the Best

August 2, 2025
A MyAmyloidosisTeam Member

AI is overused and not as reliable as source of information about amyloidosis as some people may believe. Studies from respectable medical sources are more inand reliable. reliable. In my opinion, this website overuses artificial intelligence sources. Of course, that is their prerogative. The Amyloidosis Support Group in general, seems to be more professionally based and carries far more reliable information. They also hold in-person meetings nationwide. Many such meetings are filmed and then loaded into YouTube videos that are free and accessible to all.

August 3, 2025
A MyAmyloidosisTeam Member

So what does AI have to do with Amyloid ?

August 3, 2025

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