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Recently diagnosed with AL Amyloidosis: Any advice?

Blood Cancers & Disorders | Last Active: May 18 8:14am | Replies (42)
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@vmarra

This was so helpful. We met with Dr. Gertz and we were at Mayo Rochester. He has not yet gone over her test results yet with her. They were just done yesterday. I just looked at them. I’m not a doc but have engrained myself in any and every bit of knowledge I can find

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Replies to "This was so helpful. We met with Dr. Gertz and we were at Mayo Rochester. He..."
Lori, Volunteer Mentor | @loribmt | Jul 14, 2022

Knowledge is power. You’ll find the doctors and the medical teams at Mayo are very approachable, open with their discussions and will do their best to educate you and your mom on her disease and treatment. They want their patients to have that power. Don’t hesitate to ask questions.

Here’s a link to some discussions in our forum regarding How to get off to the best start with a new specialist. You might find some ideas for questions you might want to ask.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765
My husband and I, even after 3 years, are still blown away by our experiences with my team of doctors, NPs and staff. They spoiled us for anything else. I know your mom will be in excellent hands there.
Her doctor is one of the leading research specialists in Amyloidosis. Here’s his profile. https://www.mayo.edu/research/faculty/gertz-morie-a-m-d/bio-00077439

So take some comfort in knowing she’s at a great starting point for her journey! She’ll have excellent guides and care.
How’s your mom feeling emotionally?

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