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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: Sep 19 12:31pm | Replies (819)
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@mikxtr

I *do* have MGUS, diagnosed summer last year. They consider me low risk and my M Spike did not change with the 2nd test (although both light chains did increase so nervous about that) so have not referred me. I did ask for a consultation with a Hematologist and he was incredibly dismissive because I'm low risk and have low level of M-protein.

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Replies to "I *do* have MGUS, diagnosed summer last year. They consider me low risk and my M..."
Patty, Volunteer Mentor | @pmm | May 28 10:35am

@mikxtr
Oh okay. I went another direction. Here’s the way I look at it. MGUS is not cancer but I want a specialist who works with MGUS and Multiple Myeloma patients every day. I think about it like I do my colonoscopy (yuck, sorry!). I want the gal who has done thousands rather than the first year resident or general practitioner.
I also want someone who has had more than a quick blood disorders rotation in med school. Hematologists complete med school and three year residency then in addition do a 3 to 5 year fellowship of specialized training. Blood disorders are complex and can have bone and soft tissue implications.
With all due respect to my excellent PCP, I want a specialist to diagnose and possibly eventually treat my MGUS if my numbers get wanky or if it advances.
I’m really glad your MGUS is low risk. How often will you get blood analysis?

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