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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: 5 hours ago | Replies (774)

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@gingerw

@tallyteresa My MGUS/myeloma journey started when a new nephrologist recognized concerning blood results. Apparently, they had been there for a while, but a previous kidney doctor [associated with an HMO] had glossed over them. When I switched to an out of network dr, she encouraged me to look further into the issues. Hence, a trip to a hematologist/oncologist, where I was diagnosed with the MGUS in Nov 2017. Nov 2018 it had advanced to SMM [smoldering multiple myeloma], which was highly unusual as most MGUS patients go for many years without any change. Nov 2019 my system advanced to multiple myeloma, and I am active treatment for that since August 2021. Guess I just had to charge ahead! I am also a kidney disease patient since 2005, now on dialysis, but that is a result of a rare autoimmune disease, not anything related to MGUS. My treatment plan for both conditions are intertwined, and those two specialists are in good communication with each other to coordinate, thank goodness!

Each day I do the best I can, given my energy levels and motivation. When I describe myself as an "overachiever", it's because there have been several autoimmune conditions diagnosed, plus 3 different cancers. I have been told I am not the normal patient, having a unusual combination of issues, that require creative treatment options. I tell my medical team I am a guinea pig for their future patients with challenging combinations, and that's okay. Being part of research is a great way to look at it, on those days when it seems darker than the day before.
Ginger

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Replies to "@tallyteresa My MGUS/myeloma journey started when a new nephrologist recognized concerning blood results. Apparently, they had..."

You bill yourself as an overachiever and I refer to myself as "special" for my 2 primary cancers in 18 months plus the precancers, lol. Seriously though, sorry to hear about the dialysis as I'm told it's tough. How many days per week for you? And also, thank you
so much for being our Volunteer Mentor.