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A MyMyelomaTeam Member asked a question 💭
Las Vegas, NV
August 31
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Answer Summary

Members discussed whether amyloidosis is related to multiple myeloma and shared experiences waiting for biopsy and CT scan results while... Read more

Members discussed whether amyloidosis is related to multiple myeloma and shared experiences waiting for biopsy and CT scan results while navigating confusing diagnoses like MGUS and Smoldering MM. A recurring theme was that MGUS and Smoldering MM can cause real symptoms like bone pain, fatigue, and heart issues, even though many doctors say otherwise. Several members encouraged keeping a symptom log, asking doctors direct questions, researching independently, and making heart-healthy diet changes while waiting for answers.

A MyMyelomaTeam Member

You need to ask them to tell you. I found it really hard to get direct answers when I was first diagnosed, that’s why I started researching.
Paula🌹

September 7
A MyMyelomaTeam Member

I take Diltiazem for my heart. Another medication did not help with my fast heart rate. I’m not sure what they will give you. Were you definitely diagnosed with Amyloidosis? Watch for shortness of breath. I bought a blood pressure machine and a Pulse Oximeter to check my heart rate and oxygenation. I kept a log to see if it was getting worse or better. Log your symptoms too. Time and date. Share with your doctor. Die can make a difference with MM and the heart. Hearts love when you eat berries (organic) raspberries, blackberries, blueberries, strawberries. Low fat diet helps too. Lots of fruit and vegetables. They can only help.
Paula🌹

September 6
A MyMyelomaTeam Member

I had lots of symptoms with MGUS and have more with Smoldering MM. Did you get an Echo in the ER?
Paula🌹

September 5
A MyMyelomaTeam Member

So mgus can cause symptoms ? Cause yes this is what I experience. I’ve also read amylodosis causes these same issues. So what test do they use to roll that out?

September 3
A MyMyelomaTeam Member

Stephanie,
I have been constantly told MGUS, which I had first, and now Smoldering MM do not cause any symptoms. This is not true. I have low white blood cells, low red blood cells, high creatinine, bone pain, osteoporosis, cramping, fatigue, constipation, then diarrhea. The list goes on. I take Zinc to support the TP53 tumor suppressor gene. I take Calcium, Magnesium, D3 + K2 for the bones. It’s all working even though I am high risk.
Paula🌹

September 3

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A MyMyelomaTeam Member asked a question 💭

A MyMyelomaTeam Member asked a question 💭
want to share a little update about my journey. Recently I went for a CT scan of my lungs, and today the doctor explained the results to me. They found some changes in my left lung compared to before. There are areas where the lung lining looks thicker, and a small mass in the lower part of the left lung has grown a bit since my last scan. Because of these changes, the doctors want to do another test called a bronchoscopy, where they use a small camera to look inside the airways and take samples to understand it better. Hearing all this was not easy for me. It made me emotional because it feels like one thing after another. But at the same time, I am thankful that I am already under medical care and the doctors are taking steps to find out exactly what