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August 5, 2023
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Answer Summary

Members with cardiac amyloidosis connected over worsening joint pain and carpal tunnel, particularly in thumbs and hands, describing... Read more

Members with cardiac amyloidosis connected over worsening joint pain and carpal tunnel, particularly in thumbs and hands, describing challenges with daily tasks like opening jars, fastening belts, and buttoning shirts. Several members found relief through cortisone shots, topical Voltaren gel, and carpal tunnel surgery, with one member reporting dramatic improvement in quality of life after surgery. A recurring theme was gratitude for small blessings, leaning on faith and loved ones for support, and the importance of sharing symptoms with cardiologists to help doctors better understand this aspect of the disease.

A MyAmyloidosisTeam Member

I've had carpal tunnel for a couple of years, was told in September 2022 that I have cardiac amyloid. I've had a sore right thumb joint off and on for the last 4-5 months. In the last month my right index finger has become very arthritic. Hard to open doors and pill bottles!

November 2, 2023
A MyAmyloidosisTeam Member

I have had surgery in the past, and it does work wonders. Mine is mostly in the joints of the hands, getting worse. Some days hard to open and door or a door handle.

November 16, 2023
A MyAmyloidosisTeam Member

Check with your doctor first. My doctor told me not to take tumeric because it can make the chemo toxic

October 31, 2023
A MyAmyloidosisTeam Member

Wow, me too. The muscle on my left hand between thumb and forefinger is also gone.
I’ve been telling my amyloid cardiologist about my thumbs
and he just shakes his head.
Please everyone on this thread let your cardiologist know about arthritic joints.
Thanks!

September 18, 2023
A MyAmyloidosisTeam Member

Stanford, have the doctors told you there’s nothing more they can do for you? If they haven’t you have to push on. If there’s a treatment you haven’t tried yet try it! There are drugs that are in phase III of their trials. Hopefully one comes on the market soon. You can’t give up hope. You have to be around for America’s rebirth 😉

I will keep you and all of us in my prayers.

By the way, I’ve said this before, the only one who knows how much time you have left is God. So let Him handle it ❤️

September 16, 2023

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Saint Louis, MO