Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

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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Profile picture for kayabbott @kayabbott

It would be good to have renal bloodwork that includes your GFR (glomerular filtration rate) and albumin and creatinine levels. MGUS can sometimes smack one's kidneys around. I've had IgA Kappa MGUS for 8 years, and this year chronic kidney disease showed up; my only other risk factors are being 70 and having celiac disease. Bubbly and protein bits in urine suggests one's kidneys are not filtering proteins as efficiently as they should. Urinary tract infections commonly have different symptoms (itchy, smelly,...).

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Thanks, Kay. I do get those tests with the annual screening. I was planning to wait until the next round (July) but thought I would ask in the meantime to see if I should test sooner. It's pretty minor so guess I'll stick with the plan.

Happy New Year!

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Profile picture for mikxtr @mikxtr

Thanks, Kay. I do get those tests with the annual screening. I was planning to wait until the next round (July) but thought I would ask in the meantime to see if I should test sooner. It's pretty minor so guess I'll stick with the plan.

Happy New Year!

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You might consider asking your doctor about blood/urine tests. IF you test positive for kidney problems there are natural and medical ways to prevent or limit further damage. Here is a rather boring paper (or I'm reading too many rom coms) https://pmc.ncbi.nlm.nih.gov/articles/PMC6832055/ . Here is one on sediment: https://www.medicalnewstoday.com/articles/321338 . It is good to avoid kidney stones (drinking citrus water helps), my husband had those (painful, including blasting them).

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Profile picture for kayabbott @kayabbott

You might consider asking your doctor about blood/urine tests. IF you test positive for kidney problems there are natural and medical ways to prevent or limit further damage. Here is a rather boring paper (or I'm reading too many rom coms) https://pmc.ncbi.nlm.nih.gov/articles/PMC6832055/ . Here is one on sediment: https://www.medicalnewstoday.com/articles/321338 . It is good to avoid kidney stones (drinking citrus water helps), my husband had those (painful, including blasting them).

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Not all kidney concerns can be directly linked to MGUS. I had diagnosed chronic kidney disease before my MGUS. When we tested for the Bence Jones protein, it was not present. This is a very solid indicator that would show kidney involvement due to the MGUS. For me, my kidney disease is the result of a very rare autoimmune condition. Keeping our kidneys healthy, no matter what else is going on, is very important!
Ginger

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Profile picture for tesflo1 @tesflo1

How were you and who diagnosed the chronic Lyme? I’ve been told I may have it, Lyme tests showed some positive tests but my RA DR AND PCP won’t “diagnose” bc they don’t treat it. Found out I have MGUS recently - don’t know what to do with that one either - except yearly tests. I’m interested in getting Lyme diagnosed to see what can be done bc maybe it’ll help with all I have.

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Hey! I was diagnosed with Lymes in 2006 if I remember right. I actually went to a dr for my elbow that I had messed up while removing a ton of old wallpaper. He wasn’t a naturopath or holistic dr, but a friend told me he had a treatment that worked without any drugs. When going over my history he asked if I had Lymes or had ever been tested. Told him no. He wanted to test me and again I told him no. I really didn’t want to deal with anything else. A year later at the urging of my family I got tested. It was positive. He told me we could try antibiotics but that mine was chronic & they probably wouldn’t help. I always wondered if that was the second protein showing high in my blood. I found out later that he was an LLD. Lyme Literate Dr. I’m sorry you can’t get one of your drs to help you out. I have only been able to get one dr to even acknowledge it. Her brothers best friend almost died from it so she had a front row seat to how devastating it can be. Others flat out say they don’t believe in it or like one said…“when I hear hoofbeats I look for horses.” Seriously. My Lyme dr was very good but very expensive. Insurance won’t touch it. I really tried to condense this down so if you have anymore questions that maybe I can help with please let me know.
Wishing you all the best!

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Profile picture for Colleen Young, Connect Director @colleenyoung

@karishmagupta, going through the diagnostic process is hard, especially the waiting. It sounds like you have received the results of your mother's bone marrow biopsy before meeting her medical team to discuss the results and next steps. Fellow patients can't interpret these results for you on a forum like this one.

Biopsy results are only one piece of the puzzle in the diagnostic process. Your mother's medical team is the only one who can interpret the results along with her medical history, other studies and clinical exam.

I know you are worried. When does your mom have an appointment to review the results and next steps with her doctor?

When is your next appointment?

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Can anybody please explain these biopsy reports .I shall be highly grateful to you

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Profile picture for karishmagupta @karishmagupta

She will be getting her appointment till Friday 3rd January.I got this aspiration report from lab today only but the biopsy report will be coming on Friday ..i am not able get the meaning of these ones .So was a bit worried .I asked here with the hope that if someone gives me some clarity and I can have a bit peaceful sleep at night ..It's ok I can understand here the consultation is more important

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Pls somebody decode my reports of biopsy for my mother ..I am completely worried kindly please let me know

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Profile picture for karishmagupta @karishmagupta

Pls somebody decode my reports of biopsy for my mother ..I am completely worried kindly please let me know

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Viewpoint from a patient who was diagnosed with high-risk MGUS (6-8% plasma cells in 2 BMBs, light chains 100:1 lambda:kappa, M-spike, BJ proteins in urine) about 9 months ago, teetering on edge of treat / watch closely): you DO NOT NEED anyone here to "decode" your mother's labs. You need your mother's doctor (preferably hemo/onco) to do so. This is complex stuff. The most people here can do is wish her (and you) well.

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Profile picture for karishmagupta @karishmagupta

Pls somebody decode my reports of biopsy for my mother ..I am completely worried kindly please let me know

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@karishmagupta We are not medical professional here. We are fellow patents and caregivers who share our experiences and offer support to others going through the same thing.

Please take to your mother's doctors for them to tell you what the biopsy results indicate. They are your best source for information for your mother's individual case.
Ginger

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I was diagnosed with MGUS IgG lambda in June 2023. My abnormal protein band 1 was 1.6 g/dl , was 1.6 in December 2023 and in December 2024 it has increased to 2.0 g/dl. I am a 59 year old female. I have a weakened immune system, Factor V Leiden (genetic clotting disorder) and recently had surgery to repair gluteal tendons after a bone in my femur splintered from my greater trochanter taking my tendons with it.

I am concerned about the increase in my monoclonal values and return to hem/onc in April for retesting and scheduling bone marrow biopsy and CT body scan. I have 4 grandchildren and amazing family but I do not share my concerns because I do not want them to see me as anything less than a vibrant healthy human being. How do you stay positive. I meditate, walk, paint but I am always thinking about how i can get rid of this.

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Profile picture for donna195 @donna195

I was diagnosed with MGUS IgG lambda in June 2023. My abnormal protein band 1 was 1.6 g/dl , was 1.6 in December 2023 and in December 2024 it has increased to 2.0 g/dl. I am a 59 year old female. I have a weakened immune system, Factor V Leiden (genetic clotting disorder) and recently had surgery to repair gluteal tendons after a bone in my femur splintered from my greater trochanter taking my tendons with it.

I am concerned about the increase in my monoclonal values and return to hem/onc in April for retesting and scheduling bone marrow biopsy and CT body scan. I have 4 grandchildren and amazing family but I do not share my concerns because I do not want them to see me as anything less than a vibrant healthy human being. How do you stay positive. I meditate, walk, paint but I am always thinking about how i can get rid of this.

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@donna195
I don’t let my health issues define me. I stay active in my community and enjoy family time when they’re busy schedules will allow. It sounds as though your medical team is on top of it and that they’re scheduling scans and a BMB. That’s a good thing.
When you have chronic health conditions, it’s easy to stay focused on that and not the happy things. But MGUS is not cancer and the risk of progression to cancer is very small. It’s important to keep that in perspective.
I’m sure your family does view you as a vital, healthy person. The truth is that you are a vital person who has some health challenges. That doesn’t take away from your value as a human being. As I age, I am vexed by the aging process and the decline in my physical stamina. I still do the things that bring me joy, but I do them slower and with less frequency. I feel no shame in that.
You wrote that you don’t really discuss your health with your family and while I understand that, I do hope that you have people with whom you can share. It’s great to have other people who know what you’re going through and in whom you can confide.
Like you, I wish I could get rid of the MGUS but unfortunately, it’s sticking around. We will probably die from something totally unrelated, however. So I stay positive by living my life fully, doing as much as I can to stay fully engaged and understanding that my risk from MGUS is very small for progression to blood cancer. I stay connected to other people who have a similar journey through Mayo Clinic Connect. It really helps to know that I’m not alone.
I hope your April appointments are reassuring. Will you let me know how they go?

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