Does anyone else have MGUS?

Ginger, how are you doing with the progression? Hope your team has found the right treatment for you.
You are so right that most all of us were diagnosed as our Drs were looking for answers to a different but likely related problem. May I ask how long you stayed stable? I get being the over achiever, lol. One of my Mayo Drs told me I was type A and in "push and crash" mode because I never allowed myself to much slow down during 2 recent cancers. I responded that he wrongly seemed to think that was a bad thing. Until I realized he was right, of course. We can still learn to do better by ourselves, can't we ? I'm surely trying!

Hi, MGUS and Beyond, friends.
@lynne756, welcome! Glad you mentioned Ferritin. Mine is currently 11 and I don’t understand why it’s low, yet other iron-related scores, Hematicrit and Hemoglobin, are often elevated. Just made a list of the declining ferritin scores in their consecutive dates in my contact list, then made an edited screen shot of this to send to my hematologist.

He advises seeing me every six months but I make appointments with him every three months. My decision due to concerns about risk factors. I’ll see him Tuesday when I hope to get greater understanding of the whole gestalt of various out of range blood test results. Googling each just feels like being in a dark room with a sleeping elephant while only being able to touch its isolated parts. What are the implications of this IgM Kappa MGUS diagnosis with its odd other blood tests? Hope to learn more about it this time while being glad it has been fairly stable but slowly elevating since 2015.
Ginger, your commentary is always helpful. Grateful hugs!

Hi, I’m 49 years old and just got an Mgus diagnosis. I’ve been trying to find out all I can and have so many questions. I’d like to connect with other Mgus people with more experience and knowledge. Thank you!

I am a relative newbie. My MGUS was discovered quite accidentally over a year ago. I was rear ended while driving and had some neck pain. A CT showed a lesion at C2, some artery blockage and multiple nodules on my thyroid. Routine bloodwork was normal but further investigation revealed that pesky M protein in my blood. It was not found in my urine.
The “lesion” turned out to be arthritis. The nodules turned out to be benign, and the blockage was not significant enough to cause hand wringing. I was referred to the local Cancer Center, CARTI, to see a HEM/ONC doc. His diagnosis was monoclonal IgA Kappa.
I am seen every quarter, this time he scheduled me 4 months out.
My numbers have been relatively stable.
I have type 2 Diabetes. A1C of 6.4. Pretty well controlled by Metformin. I feel good. A little less active physically since I retired last March at nearly 70.
I try not to dwell on the “what ifs” and concentrate on things over which I have some control. Right now I’m fortifying my resolve to take all the left-over holiday candy to the little food pantry. 🙂 Don’t worry…I’ll take some healthy things too.
Best wishes to all for a wonderful New Year!

Patty

@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

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.

Just diagnosed and I must admit I'm concerned. Since there's no cure or treatment, waiting to see if it progresses is very unsettling.

I was recently (November 2022) diagnosed with MGUS - routine blood work from primary care - Quest Lab suggested on report that additional tests be run.

Was already an existing patient at MD Anderson - Houston. Was able to get appt. with Dr. Saini in Myeloma dept. He ran lots of blood work and confirmed I have IgG MGUS.

Will have follow up bloodwork done every 3 months. Next appt. at MDA is
February 9th, 2023

What is your plan going forward ?

Jackie in Hill County, Texas

I was recently (November 2022) diagnosed with MGUS - routine blood work from primary care - Quest Lab suggested on report that additional tests be run.

Was already an existing patient at MD Anderson - Houston. Was able to get appt. with Dr. Saini in Myeloma dept. He ran lots of blood work and confirmed I have IgG MGUS.

Will have follow up bloodwork done every 3 months. Next appt. at MDA is
February 9th, 2023

What is your plan going forward ?

Jackie in Hill County, Texas