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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

Could You Share Any Dietary Changes And Tips That Have Helped With Amyloidosis?

By A MyAmyloidosisTeam Member 16 answers

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

Do You Follow A Specific Diet To Help With Amyloidosis?

By A MyAmyloidosisTeam Member 34 answers

What Amyloidosis Symptoms Keep You Up At Night?

By A MyAmyloidosisTeam Member 37 answers
807 questions

Do Insurance Companies Eventually Pay For Vyndamax? My Company Is Fighting "prior Approval" Even Though I Have Had A PVP Nuclear Scan.

A MyAmyloidosisTeam Member asked a question 💭
Sun City Center, FL

I have wild Amy. Do I need to do invasive heart tissue biopsy?

A MyAmyloidosisTeam Member

Thanks Joel
I got my Vyndamax 2 days ago. It took a total of 4 weeks. Insurance company wanted invasive heart biopsy but my doctor convinced them to take results from PVP nuclear scan. Heart biopsy… read more

July 14

Does Anyone Else Experience Painful Legs?

A MyAmyloidosisTeam Member asked a question 💭
Scarsdale, NY

Both my legs hurt, although I have not injured them. And at night, I am often awakened by pain in one leg or the other or both and attempt to relocate them to another part of the bed or hanging over the side of the bed. Is this typical of cardiac amyloidosis? I was diagnosed with wild type in November 2023.

A MyAmyloidosisTeam Member

Barton. I had carpel tunnel in my left hand but after a transplant it went away. Have you had one?

October 8

Memory Is F’D. Who Is My Contact In TSWASSEN. I Forget. Will Be Arriving On The Eighth. Please Respond So We Can Get Together.

A MyAmyloidosisTeam Member asked a question 💭
Duncan, BC Canada
A MyAmyloidosisTeam Member

Thx Jim. Returning from Virginia on 8th. Enjoy your God’s Country visit with your daughter. Sure miss Alberta and the Stampede. With her over 10 years, years of pure fulfillment.
Cheers Jim,
Ian

July 6

Hi I Was Diagnosed With Hereditary Amyloidosis Attr T60A Variant In June 2023 Receiving Vutrisiran Since October 2023 Also Have Neuropathy

A MyAmyloidosisTeam Member asked a question 💭
Milton Keynes, UK
A MyAmyloidosisTeam Member

Thanks paddy for the information

October 29

How To Increase My Energy Level. Getting Excited Talking To Someone Will Cause Me To Pause For 20 To 30 Seconds To Speak Again

A MyAmyloidosisTeam Member asked a question 💭
Duncan, BC Canada

Have ATTRWT. I won’t be
depressed, however I’m starting to feel like I’m going downhill. My mind and memory are going…. I know “1 step at a time” but I’d like to start with 1 step. I’m still good though.

A MyAmyloidosisTeam Member

Thanks Stanford. God’s blessings

July 8

What To Expect After Chemo And How Long Does It Take To Regain Strength. Living With AL Amyloidosis.

A MyAmyloidosisTeam Member asked a question 💭
Brisbane, AU
A MyAmyloidosisTeam Member

After chemotherapy for AL amyloidosis, you can expect several things:

1. Side Effects: Chemotherapy can cause side effects such as fatigue, nausea, and hair loss. These effects vary depending on the… read more

July 6

How To Reduce Water Of The Body Naturally?

A MyAmyloidosisTeam Member asked a question 💭
Indian, AK
A MyAmyloidosisTeam Member

We can not drink more water otherwise water retention will increase

July 8

Have Wt Since Oct 23. Have Lost Muscle Mass. Anyone Been Able To Add Back Mass By Lifting Weights?

A MyAmyloidosisTeam Member asked a question 💭
Charleston, SC
A MyAmyloidosisTeam Member

You sound like you have the tenacity to do what you set out to do. Baby steps my friend! You’ll get there!

July 18

After Diagnosed, Pacemaker, Carpal Tunnel Surgery, Not Able To Walk On Own, So Much Swelling, How Long Before It’s The End Time.

A MyAmyloidosisTeam Member asked a question 💭
The Villages, FL
A MyAmyloidosisTeam Member

I hope you are medicated with a well-known Amyloidosis medication. Your life could be prolonged significantly if you follow your Drs, orders. Have faith in a power greater than yourself & trust him to… read more

July 1

In A Scientific Publication(June 23) , Maybe NIH, About Attrcm Trials On A Large Number Of Participants With ATTRcm, 3 Older Men Reversed It

A MyAmyloidosisTeam Member asked a question 💭
Tenino, WA
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