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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 Are Your Top Tips For Dealing With Amyloidosis In The Heat?

By A MyAmyloidosisTeam Member 10 answers

So How Do You Fight The Loneliness That Comes With Amyloidosis?

By A MyAmyloidosisTeam Member 31 answers

What’s Your Favorite Olympic Sport To Watch?

By A MyAmyloidosisTeam Member 22 answers

What's A Common Misconception About Amyloidosis?

By A MyAmyloidosisTeam Member 24 answers
807 questions

Wtattr Nauseous Most Mornings I Take Difluisinal

A MyAmyloidosisTeam Member asked a question 💭
Detroit, MI
A MyAmyloidosisTeam Member

Can you take zofran? That helps me with nausea.

October 23

What’s Your Trick For Enjoying Holiday Treats And Staying On Track? 🎃

A MyAmyloidosisTeam Member asked a question 💭
San Francisco, CA
A MyAmyloidosisTeam Member

I am in Maui and have great fresh salmon poke (omega 3). plus I eat lots of kiwis (vitamin C). Do not know if it helps, but cannot hurt!

November 5

Amyloidosis What Type Of Amyloidosis Do Yo Have And Are You Aking A Diuretics? Thanks, Steve

A MyAmyloidosisTeam Member asked a question 💭

I am Asking for an informal survey of what type of amyloidosis do you have and are you taking a diuretic. We noticed on this site that there are a lot of diuretic users and I tried my wife's diuretic for a week with an improved urinary flow. However, my heart group took me to the woodshed and urged me not to be experimenting with diuretics. Hence I would appreciate any input you might have especially for wild type ATTR combined with diuretic use.

A MyAmyloidosisTeam Member

I have Al Amyloidosis, and I’m currently in the hospital right now having fluid removed but usually I’m on Torsemide 100mg which I take twice a day but last chemo medication made me swell again.

October 21

Does Anyone Swell After Exercising Or Physical Activity?? Seems Like While On Treatment I Swell More After I Exercise And Was Wondering.

A MyAmyloidosisTeam Member asked a question 💭
Turlock, CA
A MyAmyloidosisTeam Member

Or maybe try compression socks

October 17

Anyone With Al Ambloidosis Have Problems With Fluid In Lungs?

A MyAmyloidosisTeam Member asked a question 💭
Louisville, KY
A MyAmyloidosisTeam Member

Oh gosh I know……everyday something different….very scary

October 23

How Is Everyone?

A MyAmyloidosisTeam Member asked a question 💭
New Hampshre

Wild type CardiomyopathyAmyloidosis with heart failure

A MyAmyloidosisTeam Member

Looking good Dave! Enjoy!

October 13

Does Anyone Regain The Large Weight Loss Brought On By The ATTR Disease?

A MyAmyloidosisTeam Member asked a question 💭
Davidsonville, MD
A MyAmyloidosisTeam Member

Thanks Francis!

October 13

Does AMY Affect Nerves Resulting In Legs Crippled By Pain. Have Wild Type AMY. Been On Tafamidis Approximately Six Months.

A MyAmyloidosisTeam Member asked a question 💭
Duncan, BC Canada

Pain originates in hip, travels down to left side of shin. Leg can be so numb that walking is not an option.

A MyAmyloidosisTeam Member

Try gabapentin, it helped me

October 13

How Soon Can I Expect An Improvement Since Starting Tafamidis?

A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

With Addisons Disease you need salt and fluids .. the exact opposite to AL .

October 13

What Medical Facility Has A Team Approach To Amyloidosis Including All The Complications, Neurology, Balance, Gastro, Carpal Tunnel, Etc.

A MyAmyloidosisTeam Member asked a question 💭

I was diagnosed with Wild type from exposure to Agent Orange in Vietnam 67-68. I have been on Vyndamax for 18 months with stable results. However, my very capable Heart physician is a heart team only. I was referred to a neurology group but appointment availability is mid March!! Hence the search for a comprehensive team approach.

A MyAmyloidosisTeam Member

😔

October 14
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