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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

Does Anyone With Amyloidosis Have A Liquid Intake Restriction? I Think I Need It I Gather Often Liquid In My Chest And Need Fluid Restrict

By A MyAmyloidosisTeam Member 17 answers

Are You Frustrated With Finding Effective Treatments For Amyloidosis?

By A MyAmyloidosisTeam Member 14 answers

Which Amyloidosis Symptom Surprised You The Most?

By A MyAmyloidosisTeam Member 72 answers

What's A Common Misconception About Amyloidosis?

By A MyAmyloidosisTeam Member 24 answers
814 questions

Does Any One Feel Worse Physically When The Weather Is Rainy,damp,cool ?

A MyAmyloidosisTeam Member asked a question 💭
CAMILLA.GEORGIA
A MyAmyloidosisTeam Member

Yes its normal for feeling down & sad but it's also worset w neoropethy slow down ur blood circulation in cold weather

March 14

Marcus Do You Follow A Total Vegan Diet Or Plant Based Diet ? If So,has It Helped ?

A MyAmyloidosisTeam Member asked a question 💭
CAMILLA.GEORGIA
A MyAmyloidosisTeam Member

Thus far, it has been helpful.

March 3

Hello My “Amy” Family. My Questions: Do You Have The V1221 Variant And Were You Able To Trace It In Your Family? Caught Early??

A MyAmyloidosisTeam Member asked a question 💭
Bel Air, MD
A MyAmyloidosisTeam Member

My daughter has not been tested, but my son had heart failure 23 years ago and they called it idiopathic. Good thing the disease was advertised.

March 6

What Drug Is For Neuropathy And Stiffness?

A MyAmyloidosisTeam Member asked a question 💭
Charlton City, MA

Suffer from wild type attr

A MyAmyloidosisTeam Member

It's a pleasure hearing from u & appriciate & hug u back

March 14

Is Anyone Taking Nattokinase (NK) Along With Vyndamax For ATTR-Wild Type? If Yes, Have There Been Any Noticeable Effects?

A MyAmyloidosisTeam Member asked a question 💭
Tampa, FL
A MyAmyloidosisTeam Member

Thank you, John.

March 2

Has Anyone Had Al Affect The Nerves And Muscles?

A MyAmyloidosisTeam Member asked a question 💭
Bay City, MI

My hubby has a muscle tear in his butt, hip, leg & back pan. He is having a caudal epidural next week.

A MyAmyloidosisTeam Member
March 2

Is Anyone Else Still Suffering Nausea And Diarrhea After STEM Cell Transplant? Mine Was Beginning Of Nov And Still Struggling With Effects

A MyAmyloidosisTeam Member asked a question 💭
Cleveland, OH

AL Amyloidosis

A MyAmyloidosisTeam Member

That seems like a long time to still be effects of SCT. MD know?

March 2

Anyone Added Green Tea Extract To Routine For Hereditary Amy?

A MyAmyloidosisTeam Member asked a question 💭
CAMILLA.GEORGIA
A MyAmyloidosisTeam Member

Thank you ! Saw it on Amazon.

March 6

Does Anyone Have Any Input On Taking Farxiga? Thanks

A MyAmyloidosisTeam Member asked a question 💭
Virginia Beach, VA
A MyAmyloidosisTeam Member

My husband started taking it a year ago. Also Vyndamax. His cardiologist recently told him that a new study just came out indicating it was excellent for CHF. He has not had any side effects.

March 13

Has Anyone (other Than Me) Been Diagnosed With AEFEMP1 Amyloidosis And, If So, How Are You Being Followed?

A MyAmyloidosisTeam Member asked a question 💭
Englewood Cliffs, NJ

Mine was found in a hip joint. I have elevated kappa serum light chain protein, normal lambda,and a very slightly elevated k/l ratio.

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