Amyloidosis Questions and Answers | MyAmyloidosisTeam

Connect with others who understand.

sign up Log in
Resources
About MyAmyloidosisTeam
Powered By

Questions & Answers

Get practical advice and insights from people who understand

Don't see your question? Ask one here
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.
624 questions

Does Anyone With Postural Orthostatic Hypotension Still Drive?

A MyAmyloidosisTeam Member asked a question 💭

My cardiologist just recently told me he didn’t see why I wasn’t driving already. No I never passed out sitting down but still uncomfortable with the idea. He said my problem would be when I reach my destination and stand up to get out of the car. With that and the neuropathy in my feet I’m still not sure. I would love to get behind the wheel again. 🤷🏻‍♀️

A MyAmyloidosisTeam Member

Theresa, I feel like that too. Would like to know I can get behind the wheel at times. But I’m grateful I have my husband who never complains and takes me wherever I want to go.

posted 2 hours ago

Two Plus Two?

A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

what is two plus two

posted 6 hours ago

HS ANYONE NOTICED A CHANGE WEHN THEY FIRST STARTED TAKING VYNAMAX?

A MyAmyloidosisTeam Member asked a question 💭

Amyloids

A MyAmyloidosisTeam Member

No noticeable changes but one of my cardiologists bird that my heart wall thickness seems to have decreased slightly. I'm a Happy Camper about that.

posted 2 days ago (edited)

Did You Know There Is A New Drug For Amyloidosis Being Reviewed By FDA And Anticipated To Be Approved ? LEQEMBI . Another, - Being Reviewed

A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

No I don’t think so. It’s more for Alzheimer’s patients

posted 2 days ago

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 💭

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

posted 1 day ago

Does Anyone Else Experience Painful Legs?

A MyAmyloidosisTeam Member asked a question 💭

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

Is there any swelling? Maybe ask the doctor for some Gabapentin. It helped my neuropathy.

posted July 7

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 💭
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

posted 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 💭
A MyAmyloidosisTeam Member

Try, I know it’s hard, not to focus on your prognosis. Take it one day at a time.

posted July 7

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 💭

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

posted 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 💭
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

posted July 6
Continue with Facebook
Continue with Google
Lock Icon Your privacy is our priority. By continuing, you accept our Terms of use, and our Health Data and Privacy policies.
Already a Member? Log in