AL Amyloidosis And Multiple Myeloma | MyMyelomaTeam

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AL Amyloidosis And Multiple Myeloma
A MyMyelomaTeam Member asked a question 💭

Is anyone dealing with MM and AL amyloidosis? If so, can you please tell me your symptoms, how do you manage the amyloidosis, and what significant impact does it have on MM and your daily activities? I am going through testing now to see if I also have AL Amyloidosis.

Veronica2

posted May 24, 2023
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A MyMyelomaTeam Member

Veronica,
I was tested for amyloidosis (fat pad biopsy)because I have a heart condition and amyloids can affect the heart, but also the kidneys, liver, spleen, nervous system, stomach or intestines. Fortunately I tested negative and I hope you do too.
Paula 🌹

posted May 24, 2023
A MyMyelomaTeam Member

I’ve been tested for that but only by way of bloodwork. I did go into kidney failure after a dreadful infection which was being treated by every antibiotic outside the hospital. They refused to just let me be inpatient and get it cleared up. So after 6 months of excruciating pain and no results I began collapsing at night and unable to get off the floor. It took the ambulance to help me up and all I wanted to do was sleep. I was in ICU for several days and they filled me with fluids to try to get my kidneys going. I was so huge it hurt and apparently had several hernias which they did Sx. I never knew it. I couldn’t walk so went to rehab. Had a lot of transfusions as well as iron transfusions. Talk about retirement being fun.

posted October 24, 2023
A MyMyelomaTeam Member

Veronica,
Let me know how you are doing. I pray you have a negative report. By the way, it was the easiest biopsy I will ever have. No pain.
Paula

posted May 25, 2023
A MyMyelomaTeam Member

Thank you!

posted May 25, 2023

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