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Diagnosed with AL Amyloidosis. What can I expect?

Blood Cancers & Disorders | Last Active: Mar 28 1:00pm | Replies (44)
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@colleenyoung

Hi @jenrico, Welcome to Connect.
We hosted a webinar last June called "Amyloidosis – What Patients Need to Know" https://connect.mayoclinic.org/discussion/amyloidosis-what-patients-need-to-know. In this webinar Mayo Clinic cardiologist Martha Grogan, MD, and hematologist Prashant Kapoor, MD, provided an overview of amyloidosis, including tests and evaluations, treatment options and how to manage your symptoms.

I'd like to introduce you to @gaetanche @mvpdda and @tmousetis who also have AL amyloidosis. Hopefully they will join this discussion thread and share their experiences about treatment and managing symptoms.

In the meantime, can you tell us a bit more about yourself. What, if any, symptoms are you experiencing? What led to your being diagnosed?

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Replies to "Hi @jenrico, Welcome to Connect. We hosted a webinar last June called "Amyloidosis – What Patients..."
jenrico | @jenrico | Mar 13, 2016

Thanks for a quick response -<br />
<br />
Discovery of excess protein in my 24 hr. urine collection. (2168)<br />
Extreme fatigue, shortness of breath, dizziness upon standing.<br />
Have had bone marrow biopsy, echocardiogram, ekg, chest xray, numerous<br />
blood tests.<br />
Have seen Drs. Leung, Erickson.<br />

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bob100 | @bob100 | Mar 13, 2019

Hi Colleen, the link you sent does not open for some reason. Could you confirm the link and resend.

Thanks

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azlatina | @azlatina | Jul 30, 2022

Hi @colleenyoung ,
The links dont seem to work any longer. Are there updated ones we can view about amyloidosis?
Thanks,
Michelle

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