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MGUS Symptoms: What symptoms did you experience?

Blood Cancers & Disorders | Last Active: May 15 3:30pm | Replies (72)
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@angiew

I have not been rechecked for progression of MGUS they check it once a year. I have not spoken with my hematologist about this yet, but I have talked with my oncologist, and they recommended going to my primary care doctor. Unfortunately, my primary care doctor said that she doesn't have the ability to handle such a complicated case. she advised I go back to Mayo to get care. Mayo tells me to go to the ER.
The Carcinoid was removed and there is no further treatment other than monitor annually. No Chemo/radiation was needed.
I am sending a message to my hematologist today asking for a check for progression.

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Lori, Volunteer Mentor | @loribmt | Apr 19 9:49am

This has to be so frustrating for you! Even your primary physician should be able to have bloodwork run to at least check for EBV, the virus that causes mono. They can also run a CBC with differential which breaks down individual blood components. Those results can show indications of infections, inflammation, etc..

It’s really a great idea to send the message to your hematologist to see about getting in sooner than for your annual evaluation. You’re feeling miserable and you’d like to know why you’re continuing to experience all of these symptoms. Make sure that you list all of your symptoms too and when they started. How long ago was your last checkup?

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