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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.

What Amyloidosis Symptoms Do You Have That You Didn’t Expect?

A MyAmyloidosisTeam Member asked a question 💭
San Francisco, CA
September 22, 2023
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A MyAmyloidosisTeam Member

Like most people I had never heard of this disease and didn't know what to expect.
I was surprised that the chemo treatments never made me sick or give me intestinal problems. Compared to most of the people in the transfusion room, many of them cancer patients, I had nothing.

September 25, 2023
A MyAmyloidosisTeam Member

My amyloidosis was SUPPOSED to be limited to my pee bladder when diagnosed in 2018. Doctors knew less about amyloidosis then than they do now...which ain't much😉...so, answer to question:
Carpal Tunnel
Painful arthritis in hands, especially thumbs.
General body muscle aches and pains from head to toe including pain and stiffness in feet.
Dizziness and poor ballance.
Declining memory and hard time speaking on frequent occasions including sllurring speach and finding right words...

NOTE!
I'm 78 and pushed my limits a lot over my lifetime including parachuting, mountain climbing, deep diving scuba, gunshot wound, bad falls playing cowboy etc...
So not at all convinced all of above is amyloidosis or just old body complaining.

Doctors here in Las Cruces NM know less about amyloidosis than I do...at appointments I am the one doing the education and explanations.

We don't live forever here on planet Earth so I am preparing eternity with Christ, Holy Spirit, and God Himself.

September 22, 2023
A MyAmyloidosisTeam Member

I didn't know what to expect as I had never heard of the disease. The most frustrating part is feeling unwell a lot of the time and I don't know whether it is caused by the disease or my heart.

September 24, 2023
A MyAmyloidosisTeam Member

I agree with you, whether from the vaccine or not we have to move forward. I wear a bracelet that says “God is in control” to remind me! When I get anxious I look at it & calm down. We can’t change the past, but we can do our best in the future! God bless everyone!

September 24, 2023
A MyAmyloidosisTeam Member

Mostly fatigue

October 8, 2023

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