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Does anyone else have MGUS?
I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
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@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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Gail Gail Reynolds NatzlerOn Jan 7, 2023, at 9:16 PM, Mayo Clinic Connect <nf+9acff=
Hello! I'm a Finnish 52 years old woman, who has MGUS diagnos, too much IgA, too little IgM and IgG. I've got this over 10 years. I'm not typical patient, because I've really blond skin, not a man and haven't got any other things from countrysides work or so. I've got mold toxin since 1980 from my school buildings. My only treatment is the blood tests once a year. I'm not satisfied with that, because many time I've noticed, that the doctors and nurses don't know anything about that. During this pandemic, I've been working with kids who has many viruses with them. I've got the first antibiotics last December to sinuses for three years, although there is information my treatment when some infection has found, but here in Finland they gave treatment only for C-19, but I didn't get it either. Now I have 5 vaccinations and had 1 C-19 in last May, but still feeling bad. I've many other diseases too, astma, allergies, Hypothyroidism, lack of B12, D25. But with MGUS, the life is like a joke, they really don't know what to do with that, and can't advice what is the markers with body, when I have to concern about, how can I notice if the situation is going worse. Have a better year 2023 and keep smiling with all our problems!
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1 ReactionLove this: The candy and not worrying about things out of our control! Have a great day!
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1 ReactionYou 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.
@tallyteresa I say i am an overachiever, in that I couldn't be content with one health issues, I had to have more! And, my siblings are pretty darned healthy, so I guess I was just volunteering to take on health concerns! As for my dialysis, I do it every day, via peritoneal dialysis catheter.
Being a Volunteer Mentor for Mayo Connect is an honor for me, and there is great pleasure in helping others on their journeys.
Ginger
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8 ReactionsJust diagnosed and I must admit I'm concerned. Since there's no cure or treatment, waiting to see if it progresses is very unsettling.
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2 ReactionsI 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
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1 ReactionI switched from one medical provider to another due to not being able to get the care I felt was needed. I have to get new bloodwork done for my new physician because he felt the previous doctor wasn’t giving my issue enough attention. I also have anemia and that is the issue that was receiving the attention. However, according to my bloodwork from Aug 2022, the new physician said I will need to be seen every three months.
I’m a little disappointed with my previous provider because MGUS was diagnosed, but essentially it wasn’t being treated/monitored.
Hello from Galveston not far from MD Anderson. Can I ask what routine test diagnosed it? Thanks
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