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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 Difficulty Walking?

A MyAmyloidosisTeam Member asked a question 💭
San Antonio, TX

I think I have ATTAmyloidosis- still working on diagnosis - and have had spinal stenosis for years. Walking is getting progressively more difficult, and I am just wondering if this is related to the amyloidosis

May 11
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A MyAmyloidosisTeam Member

🥲
Picture is of 25 foot cross I built and mounted on my house some time ago.
Moved since then.
Cross long gone. But impact still with me...

May 11
A MyAmyloidosisTeam Member

Stanford keep moving even when it’s tough some days I can run in the house other days I have to move slower … my husband knows when I’m having what we call my wobble day… I feel off balance and just need to move slower ….
Before my treatment and during the first year was tough .. I had to use my walker at times but I haven’t used my walker over a year .. Praise God my treatments are working … I have a new pain started yesterday with my muscle’s in my right side from my neck on my left side all the way to my feet.. I use icy hot and massage those pressure points through my body laying on my bed. Lots of stretching too.. I do have a torn bicep and had rotator cuff surgery 1/20/2020.. I was a swimmer for years swam 1/2 mile ) 6 days a week and ran then walked as I aged. Thank God I already had good work out habits
71 and still moving . I have two catheters that drain each lung everyday .. 2 since Dec 2022 and the other since Dec 2023 because I have amyloids in my heart muscle it causes fluid build up
My sweet husband drains me everyday and a nurse comes two days a week .. I still walk 8,000 steps a day sometimes 10,000 all in my house .. I take Eliquis and dangerous if I fall outside .. some days I feel great other times I can’t move that good.
I love all of our Amyloid friends and I know we are all going to make it. I know a lot of info but maybe each one can take from my notes to help ya’ll … watching base ball Tenn Volvs and Vanderbilt and my Astros about to come on.
Oh also some days I feel like my legs are like lead .. they’re so heavy . Remember we are special and unique … laughing Keeps us moving too. God is Faithful to walk with through our journey .. 🥳✝️🙏🩷⚾️

May 11
A MyAmyloidosisTeam Member

It is beautiful!!

May 11
A MyAmyloidosisTeam Member

My legs are geeting progressively weaker and a weird kind of pain that make me slightly nauseous. Dizzy and off ballance all the time.
Watch me walk and you would accuse me of drunkenness. 🥴😵‍💫🤪😜

May 11

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