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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.
513 questions
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 💭
posted March 24
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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?

posted March 23
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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 💭
posted March 21
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A MyAmyloidosisTeam Member

I have it in my throat will it always be localized

posted March 22
Did Anyone Lose Muscle Strength And How Did It Take Before You Got It Back? Also To Start Building Muscle Again?
A MyAmyloidosisTeam Member asked a question 💭
posted March 19
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A MyAmyloidosisTeam Member

Sad, sorry to hear that. What meds/ treatment are you on. I will be starting daratumumab and Revlimid very soon.

posted March 23
I’m New To This, Got Diagnosed In January Of This Year. Would Like To Develop A Good Exercise Program That Works With My AL Amyloidosis.
A MyAmyloidosisTeam Member asked a question 💭
posted March 19
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A MyAmyloidosisTeam Member

You’ll get good exercise tips on here. It all depends on what your doctors say and your tolerance level. Walking is pretty good for me and sometimes dancing 😊

posted March 19
My Blood Pressure Drops When My Feet Are Dangling, Once I Raise My Feet, It Comes Back To Normal. Any One Else Have This.
A MyAmyloidosisTeam Member asked a question 💭
posted March 18
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A MyAmyloidosisTeam Member

Theresa, I thoroughly understand the patience lack. I don't have much, either,😜

posted March 31
Is Anyone Having Vision Problems?
A MyAmyloidosisTeam Member asked a question 💭

I had cataract surgery and now can't see from my right eye,(only right eye done so far. Four surgeries later and no help.

posted March 16
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A MyAmyloidosisTeam Member

No problems here - except usual old age reading difficulty needing a pair of inexpensive glasses off the shelf.
Regards all.
Richard

posted March 24
I Have Amyloidosis, Wt., With Afib. I Am Scheduled For A Biventricular Pacemaker. Is This Going To Help Me?
A MyAmyloidosisTeam Member asked a question 💭

BP is aver 115/60, pulse about 61 resting. Taking Vyndamax, Xarelto, Atorvastatin, Levothyroxin, thyroxine.

posted March 16
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A MyAmyloidosisTeam Member

I had a pacemaker/defribulator with 2 leads one at the top and one at the bottom put in after my diagnosis. I had bradycardia and a-fib. It helped me.

posted March 23
Is There Any Evidence That Jardiance Helps?
A MyAmyloidosisTeam Member asked a question 💭
posted March 16
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A MyAmyloidosisTeam Member

That’s good to hear. I’ve been on it for 2 months and definitely feeling better

posted March 23
Do Any Of You Suffer With Shortness Of Breath And Weakness When Walking?
A MyAmyloidosisTeam Member asked a question 💭
posted March 16
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A MyAmyloidosisTeam Member

Today I am to have "breathing tests". I had a brief test in my doctor's office last month that didn't have very good results.

posted April 10
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