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MGUS Symptoms: What symptoms did you experience?

Blood Cancers & Disorders | Last Active: Oct 31 9:39am | Replies (117)
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@suppiskey2surv
Thanks for the reply. I guess I need to do a lot more studying. My reading and talking with my Hemo/Onoc had me believing that now that I was officially diagnosed with SWM, I had a clearer path forward to treatment when I develop symptoms. It never occurred to me that MGUS is separate from SWM and that when SWM turns into WM, the treatments I get may not help because the issue is coming from MGUS and not WM.
I'm sorry to hear about your testing difficulties. I haven't seen that too much in my case. But every test they do bring up unrelated problems which require more testing. My last PET scan showed a hot spot, but not related to SWM. They didn't hesitate to do the testing needed to prove it wasn't cancer.
Good luck to you.

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Replies to "@suppiskey2surv Thanks for the reply. I guess I need to do a lot more studying. My..."
Suppiskey2surv | @suppiskey2surv | Oct 24 5:33pm

@dcuste

Good luck, my friend. MGUS, I believe, from what I've read, can sometimes be associated with peripheral neuropathy, just to name one thing.

My mantra these days is to advocate for those we love but also for ourselves, if we feel good enough to play both roles, simultaneously.

🫠

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