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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 Lessons From Your Amyloidosis Experience Are You Applying In 2024?

By A MyAmyloidosisTeam Member 33 answers

What Amyloidosis Symptoms Keep You Up At Night?

By A MyAmyloidosisTeam Member 37 answers

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

By A MyAmyloidosisTeam Member 31 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
813 questions

How To Control Any Fast Relief From Blotation & Gas Presure Discomfort Been Taking 180mg Simethicone & HI Have Completely My Diet & No Resu

A MyAmyloidosisTeam Member asked a question 💭
Losangeles

My condition ATTR wild neoropethy impact on digestive system blooded short of breath no other syptomes.
Have stop taking fruits dairy products,raw vegetables for 2 weeks with minimal effects

A MyAmyloidosisTeam Member

To manage bloating and gas pressure discomfort, consider the following dietary adjustments based on my knowledge base:

- Avoid FODMAPs: These are foods that produce a lot of gas within the digestive… read more

September 6

Have Any Of You Used The Treatment Kyphoplasty To Solve Lower Back Lumbar Pains?

A MyAmyloidosisTeam Member asked a question 💭
Carrollton, GA

My AL amyloidosis apparently deteriorated my L1-L5 vertebrae. I encountered significant lower back pains nine months after my chemotherapy treatments started. Treatment by Kyphoplasty is an option I have heard about. In layman terms, Kyphoplasty is an injection of bone cement to stabilize the vertebrae.

A MyAmyloidosisTeam Member

Best to you Vern. I hope you can get the procedure done sooner than later.

March 13

Has Anyone Had Cystectomy. My Doctor Is Trying To Convince Me To Have Bladder Removed. Not Yet Sure If Kidneys Have Amyloids Yet.

A MyAmyloidosisTeam Member asked a question 💭
Las Cruces, NM
A MyAmyloidosisTeam Member

Awww he just gets too excited. He just needs more training.

I don’t know about this whole thing. If you have amyloid in the bladder and your under treatment it should stop there. I don’t know if I… read more

March 10

I Do Have A Question Anyone Experiencing Excess Gas And Stomach Noises??

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

Yes, I do! My stomach seems to gurgle constantly. 🥴

March 23

Has Anyone Experienced Tongue And Taste Issues? My Hubby’s Tongue Is Scalloped On The Edges And Nothing Tastes Good.

A MyAmyloidosisTeam Member asked a question 💭
Bay City, MI

He has Al Amyloidosis diagnosed August 2023, just finishing last month of Dara cyborD

A MyAmyloidosisTeam Member

I do have taste issues. Almost all foods taste salty to me. My tongue is also enlarged and I have bitten it so many times I have continued red marks in that area. I hope things improve for your… read more

March 23

Has Anyone Been Prescribed Protonix For AL? It Is Part Of My Regimen, Along With My Chemo, And I Was Wondering If Helped Any Of You. Thanks.

A MyAmyloidosisTeam Member asked a question 💭
Denver, CO
A MyAmyloidosisTeam Member

20 mg daily for acid reflex

March 9

I Have Wild Type I Am Taking 250 Mg Diflusinal Twice A Day, I Have Lost My Appitite And Have Lost Weight, I Wonder If It Is The Amy,or Dif,

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

I have lost 6 lb & having difficulty putting it back on cuse my activity no longer support the appetite I had

March 9

Does Anybody Have Amyloidosis Symptoms Of Gas, Bloating And Belching. This Is Something New I Have Just Started Experiencing Recently.

A MyAmyloidosisTeam Member asked a question 💭
Seattle, WA

I have ATTR but don't know which subtype yet.

A MyAmyloidosisTeam Member

Yes.

March 19

Good Morning. Anybody Could Tell When Vendaquel 20 Will Be Introduced In India

A MyAmyloidosisTeam Member asked a question 💭
Indian, AK

Does Anyone Have Recommendations For Diet,recipes,etc ? I Was Diagnosed With Hereditary Amy In Jan. Of This Year !

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

My husband has to do most of the cooking. I do assist him if he asks. We have cut way down on salt. We use Mrs. Dash seasonings and use garlic powder, onion powder and different spices. The… read more

March 23
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