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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.

Featured Q&A

What’s Your Favorite Olympic Sport To Watch?

By A MyAmyloidosisTeam Member 22 answers
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Could You Share Any Dietary Changes And Tips That Have Helped With Amyloidosis?

By A MyAmyloidosisTeam Member 15 answers
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How Do Beverages With Caffeine Affect Your Amyloidosis?

By A MyAmyloidosisTeam Member 32 answers
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Have You Found Vyndamax To Help Or Shortness Of Breath Or Relieve It Altogether? Has Helped Me But I Still Get Winded Walking.

By A MyAmyloidosisTeam Member 22 answers
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936 questions

What Does Your Pet Do That Puts A Smile On Your Face Even On Your Worst Day?

A MyAmyloidosisTeam Member asked a question 💭
Nassau county, NY

My cat Keiko head bumps me. Not the best picture of me but he’s so handsome it doesn’t matter 😹

A MyAmyloidosisTeam Member

Thank you for asking this question. Made me remember lots of happiness my pets have brought over the years. Just watching them play is a joy - they have all had some version of The Happy Dog Dance… read more

January 9

Husband Toes Are Purple. Online Says It Is A Serious Circulation Problem. Since He Has W Amyloidosis And On Meds Is It? Dr Visit? Emergency?

A MyAmyloidosisTeam Member asked a question 💭
Minnesota City, MN
A MyAmyloidosisTeam Member

Hi from Saint Cloud Minnesota

January 8

How Do You Test For Amyloidosis

A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

Testing for amyloidosis involves several steps to confirm the diagnosis and determine the type. These include:

1. Physical Exam: Checking for symptoms like swollen joints, muscle weakness, or tongue… read more

January 5

Hi All. What Could Be An Early Sign Of Al Amyloidosis? My Sister Died Within 3 Weeks After Being Diagnosed.

A MyAmyloidosisTeam Member asked a question 💭
Aruba
A MyAmyloidosisTeam Member

The symptoms are so vague that sometimes the diagnosis comes too late 😿

January 6

1. Happy, Healthy 2025. 2. Pls I Need An Address Of An Expert (s!) In Amyloidosis In Berlin Germany. Pls Respond With Due Thanks!

A MyAmyloidosisTeam Member asked a question 💭
Berlin Kreusburg Germany
A MyAmyloidosisTeam Member

Sorry I can’t give you that info but if you’re able to maybe get in touch with ARC they can help point you in the right direction

arci.org

January 6

If A Person Has Wttrwt Cardiac Amyloidosis, And AL Which Is From Plasma Cells In Bone Marrow, Is Marginal Zone Lymphoma Caused By AL?

A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

Marginal zone lymphoma is not caused by AL amyloidosis. AL amyloidosis develops from abnormal plasma cells in the bone marrow, which produce amyloid proteins. Marginal zone lymphoma, on the other… read more

January 5

Have Anybody Has Secondary Problems Because The Amyloidosis,like Problem With The Tongue?

A MyAmyloidosisTeam Member asked a question 💭
Santo Domingo,Dominican Republic
A MyAmyloidosisTeam Member

Yes, amyloidosis can cause secondary problems, including issues with the tongue. Some people develop an enlarged tongue (macroglossia), which can lead to tenderness, swelling, difficulty swallowing… read more

January 5

When Do You Think Monoclonal Antibody Alexion Lab May Be Available

A MyAmyloidosisTeam Member asked a question 💭
Buenos Aires
A MyAmyloidosisTeam Member

Hopefully soon!

January 4

I Have AHTTR Inherited Amyloidosis I Have An Enlarged Tongue. I Am Asking If Anyone Else Have The Same Issue. How's Your Speech?

A MyAmyloidosisTeam Member asked a question 💭
Evans, GA
A MyAmyloidosisTeam Member

An enlarged tongue, or macroglossia, is a known symptom of amyloidosis, including hATTR amyloidosis. It can cause difficulties with speech, swallowing, and even breathing in severe cases. If you're… read more

January 4

For Those Of You Who Have Amyloidosis In Your Eyes…what Treatments Are You Undergoing?

A MyAmyloidosisTeam Member asked a question 💭
Rio Rancho, NM
A MyAmyloidosisTeam Member

Treatment for amyloidosis in the eyes depends on the type and location of the deposits. Options include lubricating eye drops, bandage contact lenses, or surgical interventions. Treating the overall… read more

January 4
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