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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.

Has Anyone With ATTR-C Had Any Bladder Issues?

A MyAmyloidosisTeam Member asked a question 💭
Northern VA

Blood in urine? urge incontinence? slow flow? Have drs related it to ATTR, neuro involvement or just the aging process? What has been the treatment and does it resolve?

June 7, 2023
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A MyAmyloidosisTeam Member

Why? I have gotten to the point where when a doc suggests a test or drug or procedure, we ask how if will make a difference in his life. If they can't give us a decent/positive rationale for whatever they are proposing, we don't do it.

September 1, 2023
A MyAmyloidosisTeam Member

I also have COMMON VARIABLE IMMUNE DEFICIENCY DISEASE ALONG WITH AMY! All major body components can be affected by my 2 diseases. Yes to have to watch as UTI can be chronic, same with kidney issues. Suggest you continue to fight for preventative and PRECISION meds (if possible).
It’s a constant battle to get my medical team to collaborate with each. I’m my own Case Manager and it just gets harder.

June 8, 2023
A MyAmyloidosisTeam Member

I still have to deal with it.

November 2, 2023
A MyAmyloidosisTeam Member

❤️❤️❤️ they’re always there to keep you going

November 1, 2023
A MyAmyloidosisTeam Member

My new pup insists on me takig him out even when my body objects. Getting small progress in prepping veggie garden plot for next year.
I don't get done in a couple hors what used to get done in 15 minutes...but keeps circulation pumping...and heck, I aint 28 anymore anyway...

November 1, 2023

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