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My results from urine tests indicate among but not on blood work, is this normal? Had bone biopsy which was negotiating.

A MyAmyloidosisTeam Member asked a question 💭

Had lung biopsy showed positive for amyloidosis. Had heart test done and cardiologist said results questionable. Then ored the labs. I am so exhausted and with calf pain. But hematologist said no treatment yet ??? Concerned

April 21, 2025
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A MyAmyloidosisTeam Member

Thanks for caring Bless You

April 21, 2025
A MyAmyloidosisTeam Member

Wow. I was under the impression you were diagnosed way back. Is there a way to find out if here is a teaching hospital near you? Perhaps apply for research study.

April 24, 2025
A MyAmyloidosisTeam Member

It is all frustrating at times. I think it is because there isn’t enough research to be able to get the answers needed.
I hope they are able to complete testing and start a treatment plan soon for you🙏🏻🙏🏻💗

April 21, 2025
A MyAmyloidosisTeam Member

Thanks, it's like they dumped this diagnoses on me and left me hanging. Frustrating

April 21, 2025
MyAmyloidosisTeam

It's understandable to feel concerned and exhausted. Different test results can show varying indicators of amyloidosis - it's possible to have protein markers appear in urine tests but not blood work. The fact that your lung biopsy was positive for amyloidosis is significant diagnostic information.

Regarding your heart tests Show Full Answer

It's understandable to feel concerned and exhausted. Different test results can show varying indicators of amyloidosis - it's possible to have protein markers appear in urine tests but not blood work. The fact that your lung biopsy was positive for amyloidosis is significant diagnostic information.

Regarding your heart tests being "questionable," cardiologists often need to do multiple tests like electrocardiograms or echocardiograms to fully understand how amyloidosis might be affecting your heart function. Your symptoms of exhaustion and calf pain should be taken seriously. While your hematologist has suggested waiting on treatment, it would be appropriate to discuss your increasing symptoms and concerns with your healthcare team. They may want to do additional testing or monitoring to determine the best time to begin treatment. Consider keeping a symptom diary to share with your doctors at follow-up appointments.

April 21, 2025

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