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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.
501 questions
Can Amyloidosis Be Diagnosed Only By Heart Screening ? Or You Need Blood Tests To Be Sure ?
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

I believe you need to rule out AL amyloidosis with blood and urine tests first . But yes, a PYP scan can determine if you have it or not.

posted April 3
Will I Reach At Least 40's Or Just Die In My 20's.
A MyAmyloidosisTeam Member asked a question 💭

I have 22 years old, turning 23 in september. Like 4 montsh ago i had an cardiology apointment and there they said i have Amyloidois but thats it. I dont know the type or anything about it, i just found it on the paper i got from the doc. It says Amyloidois under observation. I know its kinda impossible for you to tell me something like this, but i just want to know if i got a chance to live up to my 40's at least or just simply die soon in my 30's or even in my 20's.

A MyAmyloidosisTeam Member

Need to get better work up, treatment and life expectancy depends on type, get more info, your in control

posted April 4
Is There A Medication Update Pending Fda Approval For TTR
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

Acoramidis in November I've read

posted April 2
Will I Always Feel This Tiredness With My WATTR-cm? I Never Feel Rested!
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

I urge you to find a cardiologist who specializes in ATTR-wt. I was told to Keep Exercising (that was actually repeated three times in my first appointment) but your situation might be different. Add… read more

posted April 2
I Feel Nausous Mostly In The Mornings I Have Wtattr What Might Help ? Does That Come With This Disease. Thanks, Joe
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

Zofran helps me when I’m nauseous. Maybe you’re eating too late at night maybe that’s why you’re nauseous in the morning.

posted March 28
I'm Taking Vyndamax Since November & Have Noticed That My Diastolic Pressure Is In The 40's. Normal?? Drs. Disregard. Sys.120-Dis.47
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

My blood pressure was sys below 100 and my Dia was low to high 50 now it is sys 150 Dia is 70 to 82 not sure why.

posted March 26
Could You Share Any Dietary Changes And Tips That Have Helped With Amyloidosis?
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

PS
I had seconds
😁😉
And desert

posted April 2
Question: Did Anyone Lose Their Sense Of Taste And When Or If Did You Ever Get It Back?? Seems Like I Lost Mine A Few Months Back.
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

You should see a gastroenterologist. Maybe an endoscopy & colonoscopy and have them specifically biopsy for amyloidosis. If they don’t test for that specifically they’ll miss it. Visually everything… read more

posted March 27
Does Your Rapid Heartbeats Take On The Beats Of The Music That You Listen To?
A MyAmyloidosisTeam Member asked a question 💭

I could have rapid heartbeats and palpitations, then suddenly, l could hear a James Brown song or a Willie Nelson song and my palpitations get right in beat with the song. I wonder if this is normal?

A MyAmyloidosisTeam Member

Love it!

posted March 24
Have You Done A Study On Where People With Amyloidosis Grew Up?
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

I have it in my throat will it always be localized

posted March 22
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