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On my latest bone marrow biopsy it said I had 6 to 8% of plasma cells affected that are kappa restricted. Clinically this falls under mgus

A MyMyelomaTeam Member asked a question 💭
Las Vegas, NV

Category still, but I am having different symptoms. Ended up in the emergency room yesterday with shortness of breath that I have been having and a few other things of course they really couldn’t tell me much because they don’t test for proteins and stuff like that, but I go back to my hematologist at the end of the month and I’m just wondering what kind of information I should tell them about the fact that I am having symptoms couldn’t be progressing into something else without the 10% plasma… read more

September 5
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Answer Summary

Members rallied around a question about MGUS symptoms and whether they could signal progression, with a strong focus on the importance of... Read more

Members rallied around a question about MGUS symptoms and whether they could signal progression, with a strong focus on the importance of seeing a multiple myeloma specialist even if one isn't available locally. Several members shared that telehealth and out-of-state consultations with MM specialists at places like Mayo Clinic made a real difference in their care, noting that many general hematologist-oncologists lack deep MM expertise. Helpful resources mentioned included the Multiple Myeloma Research Foundation website and the Healthtree Foundation's Myeloma Coach program for finding a specialist.

A MyMyelomaTeam Member

I’m sure they referred you to a Cardiologist? You need an Echocardiogram. The blood test you need is a NT-proBNP.
Paula 🌹

September 6
A MyMyelomaTeam Member

@A MyMyelomaTeam Member,
Heather,
You are so right! My first two Oncologists did not understand MM. When I started doing research and realized I knew more than they did, it scared me. That’s when I reached out to the MMTeam and they told me of the importance of a MM Specialist. They don’t even have to be in the same State!
Paula🌹

September 14
A MyMyelomaTeam Member

Stephanie,
Shortness of breath may have to do with your heart. Did they confirm that at the ER? It could also be from anemia. Did they do blood tests?
Paula🌹

September 5
A MyMyelomaTeam Member

The Multiple Myeloma Research Foundation website has a list of myeloma specialists. The Healthtree Foundation website has a Myeloma coach program. You could contact either of these programs to get help finding a specialist. Good luck🥰

September 18 (edited)
A MyMyelomaTeam Member

I have had an echo every 3 months because of shortness of breath. I go to an MM Specialist at UAMS. MM causes SOB in some people, Krypolis too. I have asthma as well. My Hemoglobin was dangerously low but has rebounded to yr normal range.

September 8

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