← Return to MGUS Symptoms: What symptoms did you experience?

Discussion
Comment receiving replies
Profile picture for Suppiskey2surv @suppiskey2surv

@dcuste

Yes, my last BMB was in 2010, so maybe it's time for another; however, because my numbers were as low as they were back then and my M-spikes have been consistently as low as they are . . . everything here, at least, is just me being overly concerned over nothing. But, it IS something. At least that's how I feel about it. I'm not worried, necessarily, about MM anymore as I once was . . . but MGUS CAN be associated with a number of other things. That would be rare, but "RARE" is something my husband and I are all too familiar with. And, at least here where we live, even with supposedly some of the best of doctors around . . . "rare" is something that doesn't fit into their agendas. Walking into a doctor's office lately, though, with a request for a BMB would be like me asking for someone to give me a brand new car. It would be a relief to have one I could depend on, but the "return" on the expense wouldn't be there for them and my peace of mind doesn't seem to interest them in the least.

Thank you for caring and for sharing your story. I really appreciate it!

Jump to this post


Replies to "@dcuste Yes, my last BMB was in 2010, so maybe it's time for another; however, because..."

@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.