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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
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Members rallied around a community member dealing with MGUS symptoms, an abnormal EKG, and shortness of breath while awaiting test results,... Read more
I’m sure they referred you to a Cardiologist? You need an Echocardiogram. The blood test you need is a NT-proBNP.
Paula 🌹
@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🌹
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🌹
Is the ekg the same as that ? I’m going to see my primary for a Referall. What does that test measure ? The blood test
Hi Stephanie - I cannot stress enough the importance of having an MM specialist. Shortly after diagnosis in 2020 I got an online appointment with Dr. Morrie Gertz at Mayo Clinic in Minnesota. He was very helpful - I had all my records faxed to him and then spoke by videocall - and he advised adding a fourth drug to my initial therapy which made all the difference. Later I got an MM specialist in Boston, 3 hours away from my home. I started out going there every six months but had online access if I had a question or something changed. Now I consult them once a year. So the lack of a specialist in Nevada should not stop you. MM specialists know the details of effective strategies for MGUS, Smoldering MM, and active MM, as well as all the clinical trials and new treatments, etc. Most regular hematologist/oncologists do not.
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