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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.

Does Anyone Else Have Balance Issues?

A MyAmyloidosisTeam Member asked a question πŸ’­
Northern VA

My husband who was diagnosed about a year ago, but who has had symptoms of CATTR for +12years has severe balance issues. Originally they were blamed on vestibular neuritis, but seem to worsen ever more frequently with "bouts" of imbalance and falls. Sometimes there is LOC, other times he is just soooo tired that he falls down. Drs seem to just shake their heads and seem to imply it is a separate issue
Has anyone else ever had inner ear nerve damage attributed to the amyloidosis?

June 22, 2022
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A MyAmyloidosisTeam Member

Kim, don't stop talking no matter how hard it is to get the words out. It happens to me quite often. I try to think beforehand what I'm going to say. That and being bilingual, help. When I can't get the right word out in English, I switch to Spanish. It helps. Please, don't lock yourself in.☺️

August 24, 2023
A MyAmyloidosisTeam Member

Imbalance and a lack of energy is really a problem. I walk around like a little mouse, close to the walls so i dont fall. I often think how quick I was doing my house chores. I miss that energy. I still do my chores but now I run on will power instead of energy.

August 11, 2023
A MyAmyloidosisTeam Member

πŸ™πŸΎπŸ™πŸ½πŸ™πŸΌπŸ˜‡

November 16, 2023
A MyAmyloidosisTeam Member

Serious ballance issues..
Like I'm drunk all the time.
That and often difficulty findinf right words when in cinversatuon: mind just goes blank...long pauses as my wife or friends wait patiently for ne to end sentences.
Strinly suspect the stuff gets into brain.πŸ€ͺ😝

July 23, 2023
A MyAmyloidosisTeam Member

Amyloidosis is such a rare disorder and they really don't have a lot of answers because of lack of numbers to research, let alone funds. I have AL Amy in kidney and digestive. Although I am starting maintenance chemo this week, they are also looking into possible heart because of new symptoms. (Long wait for Cardiac MRI) I have been thinking more and more, that I possibly had less overt symptoms several years (maybe 20) ago - with ongoing bouts of heart burn, (diagnosed as reflux) and diarrhea (diagnosed as IBS, plus).

November 5, 2023

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