Diagnosed: MGUS

Posted by sandramgus @sandramgus, Jul 29, 2024

Hello everyone, I was diagnosed with MGUS after a routine physical, and my doctor made it sound like it wasn't that serious, but my (favorite) aunt died of multiple myeloma about 20 years ago. So, while I'm glad we caught it early, I have so much to learn. I'm still grieving the death of my mother (from a year ago) and it's a bit much to get this diagnosis after watching her die (she died from ALS.) I'm hoping to find some resources and advice here. Thank you all!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for scbookgirl75 @scbookgirl75

I didn't want to start a new thread for something similar to your post-so I apologize and don't mean to be "hijacking" your post. 🙂 What were your markers/blood levels /urine screening, etc. that resulted in a MGUS diagnosis? Currently working my way through some tests and such and sort of feel that may be the road we're heading down. Like others, it started with visits to the dr. for something else-my PCP referred me to a pulmonologist since I have had Covid 5 times and keep having low sats. CT of my chest showed micro-nodules and some inflammation. Sats drop occasionally to high 80s and upper 90s, but will then right themselves in a bit. I have had lots of fatigue and hip pain. Also frequent kidney stones. I've had iron deficiency anemia for over 15 years, and my latest tests show that my iron is 25, Transferrin sat is 5%, TIBC is high at 457, and ferritin is low at 10. (All typical for iron anemia.)
However, the latest batch of tests show a few oddities that make me wonder if MGUS is on the horizon:
A UPEP 24 hour urine showed my protein is 279, which if I am reading online correctly, is a bit high.
Albumin is low at 26.7% (From what I read, 50-60% of your urine protein should be from albumin?)
Beta Globulin is high at 33.2%, my IgA is 499 (but down from 537), my serum immunofixation electrophoresis showed an increase in the beta fraction with a beta globulin of 1.4 g/dl.
IgG subclass 3 is low at 14, my albumin is low at 3g/dl,
From what I've read a high IgA and low IgG3 can mean possible plasma cell or immune dysregulation.
With the beta globulin spike on urine electrophoresis and the moderate proteinuria, along with low albumin, along with the iron issues, elevated platelets, fatigue, etc. I am wondering if anyone else had similar issues?
I realize MGUS isn't cancer and just requires careful watching but I tend to worry less when I'm well informed. Thanks for any info, and well wishes to you all on your health journeys.

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Hi @scbookgirl75! Welcome to Connect. You’re not hijacking this tread at all. Conversations between members is what we’re all about. It’s a comfort to be able to speak with others sharing the same symptoms or diagnosis.

I think your comment was meant for @sandramgus but it doesn’t look as though she’s been active in the forum since she first posted this discussion. But there are plenty of members here including @pmm, @gingerw @paulita and others who were diagnosed with MGUS and know exactly what you’re going through. They’re willing to answer any questions you might have and share their experiences.

You’re not limited to this discussion either! If you type MGUS in the upper search bar you’ll also get a list of all the discussions regarding this blood condition.

Are you currently working with a hematologist or is this testing being done through your PCP?

It doesn’t look like ! s

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Profile picture for scbookgirl75 @scbookgirl75

I didn't want to start a new thread for something similar to your post-so I apologize and don't mean to be "hijacking" your post. 🙂 What were your markers/blood levels /urine screening, etc. that resulted in a MGUS diagnosis? Currently working my way through some tests and such and sort of feel that may be the road we're heading down. Like others, it started with visits to the dr. for something else-my PCP referred me to a pulmonologist since I have had Covid 5 times and keep having low sats. CT of my chest showed micro-nodules and some inflammation. Sats drop occasionally to high 80s and upper 90s, but will then right themselves in a bit. I have had lots of fatigue and hip pain. Also frequent kidney stones. I've had iron deficiency anemia for over 15 years, and my latest tests show that my iron is 25, Transferrin sat is 5%, TIBC is high at 457, and ferritin is low at 10. (All typical for iron anemia.)
However, the latest batch of tests show a few oddities that make me wonder if MGUS is on the horizon:
A UPEP 24 hour urine showed my protein is 279, which if I am reading online correctly, is a bit high.
Albumin is low at 26.7% (From what I read, 50-60% of your urine protein should be from albumin?)
Beta Globulin is high at 33.2%, my IgA is 499 (but down from 537), my serum immunofixation electrophoresis showed an increase in the beta fraction with a beta globulin of 1.4 g/dl.
IgG subclass 3 is low at 14, my albumin is low at 3g/dl,
From what I've read a high IgA and low IgG3 can mean possible plasma cell or immune dysregulation.
With the beta globulin spike on urine electrophoresis and the moderate proteinuria, along with low albumin, along with the iron issues, elevated platelets, fatigue, etc. I am wondering if anyone else had similar issues?
I realize MGUS isn't cancer and just requires careful watching but I tend to worry less when I'm well informed. Thanks for any info, and well wishes to you all on your health journeys.

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Hi. Thank you for connecting. I am not sure I have the ability to take a dive into your numbers but I can share a bit about my journey. MGUS arrived from a low hemoglobin on a CBC that I had when I was putting together program to recover from Long Covid. That lead very quickly to an elevated Mspike and light chains that were out of normal range. I choose not to educate myself in the blood disorder focusing instead on recovery from Long Covid. That took a lot of work. Many doctors. Many tests. And I was successful. Getting a clear in fall 24. Then everything went haywire. That lead to an appointment at Dana Farber and many more tests including a second bone marrow biopsy. Mar 25 I was elevated to Smoldering. Still a weird and fuzzy diagnosis. Not as funny to me as undetermined significance. Clearly more serious and since then a lot of eduction. And community building. I would say focus on rhe symptoms and do your best to address them and use this time to live as fully as you can. So many symptoms are possibly connected to this disorder but it is hard to verify. Acupuncture three times a week was part of my program in the fall of 21 and I know that really helped me recover. Good luck in your coming month. I am going to travel for a bit this summer and I am making some big changes in my planning for the next 5 years. ChatGPT has been a powerful tool to think this all thru as well. Take care and thanks for connecting again.

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@maddogstormy @scbookgirl75
I’m so glad for this discussion. It’s one of those “who needs to think about this right now” moments for me. I have been so distracted by recovery from a planned reconstructive surgery which I botched by falling. It’s a reminder that we take one day at a time dealing with our health, but we also need to consider what we want the rest of our lives to look like.
MGUS is not cancer and the risk of progression is low, but for some it does progress to smoldering or Multiple Myeloma. We must be diligent and do our part in the watchful waiting response. Hopefully we get a good Hematologist/oncologist who has a great deal of experience treating Multiple Myeloma. They can keep abreast of the studies, trials and coordinate our treatment with specialists treating coexisting conditions but ultimately, we must advocate for ourselves.
If I am burdened by other health concerns that require my focus, you can bet that I will be passing the football to my hem/onc guy and making sure he is paying attention. In my case, he scheduled an appointment for scans and blood draws for next week well in advance of my surgery. He can pay attention to my progress through shared medical records. Once I can walk again without a cane I can get back to business.
Since most of us who write in this forum are not medical doctors, we do not interpret lab results or give medical advice, but I do enjoy reading about people’s experiences, what they have tried and what seems to help. We can talk to our specialist about this and see what they have to say and make sure that we’re not doing something that is still advised for whatever reason. I view my relationship with my hem/onc doctor as one of teamwork. I hope everyone finds that doctor who is a good fit in this regard. I don’t have the medical expertise, but I know my body pretty well having lived in it for 73 years and there is some benefit to that history.
I look forward to hearing more about your journeys so I hope you will stick with us and let us know how things are going along the way. I’d like to hear more about your acupuncture, MDS.

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Profile picture for Patty, Volunteer Mentor @pmm

@lbhayes
Welcome to the Mayo Clinic Connect.
It certainly a chicken or egg situation to contemplate. There is a MGRS. I suspect the renal significance is when they can connect the dots between the M paraprotein and renal decline. I will post some information about it for you. It’s not easily available to me at this moment but I can remedy that in a few minutes.
Generally speaking, the hematologist/oncologist will do a whole body scan to look for bone lesions on a regular basis. If you have questions about bone pain or you are worried about progression, I would talk to your physician and certainly not wait for a year. I don’t know about you, but I always forget my questions when I go to see my doctor. I have begun to write them down in a notebook that I carry with me when I go for my doctors appointments.
If you feel dissatisfied with your medical care, you can always get a second opinion. This is a complicated blood disorder and you’re right to ask all your questions and ensure that your physician is able to connect all the dots between your symptoms and their etiology.
I’m sure some of your questions will be answered when you see your nephrologist.
Many of us have coexisting conditions that don’t have anything to do with MGUS. But the MGUS can certainly complicate things and the connection, or lack there of, has to be ruled out.
I have learned how to advocate for my health care. I have learned to be the squeaky wheel, but not alienate my treatment team. I look at my PCP and those specialist that I see as partners with me in deciding what is right for me treatment wise. I listen to them carefully, I ask lots of questions and I do my own research if it’s something I’m concerned about.
It’s also really nice to be connected through this forum as there are many people here who have already gone down the path that I am traveling and have good practical counsel for me. I was diagnosed with MGUS only three years ago and there are people “here” who have been living with MGUS successfully for well over a decade.
I’m really glad you found us. Do you feel comfortable in calling your doctor and asking for a telehealth appointment or a phone call so you can ask all your questions? If so, would you let me know how that goes for you? I’d also like to know what your nephrologist has to say if you’re comfortable with sharing that information.

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Hi I was diagnosed with MGUS last year by my neurologist. He sent me to my hematologist. He was checking my blood every 4 months and now when he checked it in Jan, everything was quite normal. He said he didn’t need to see me till next year.
I have been overweight and wanted to drop some weight. I went on Waygovy in February. I was losing weight and then began to experience frequent constipation and diarrhea. I stayed on it for a few months lost 14 lbs. I wound up with a flu and then the night sweats started. I went off Waygovy 2 months ago. I feel a lot better off it.
No more diarrhea. But I did notice I have a lot of back ache in my lumbar and upper back. Also every night now I wake up around 4am with a fast beating heart. I think the Waygovy brought on Amyloidois. I reached out to my Dr and he is on vacation so I went to another Dr to get some blood tests. My light free chain is elevated. I really hope I didn’t fast foward this blood disease with the Waygovy.

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Profile picture for karenfouquet @karenfouquet

Hi I was diagnosed with MGUS last year by my neurologist. He sent me to my hematologist. He was checking my blood every 4 months and now when he checked it in Jan, everything was quite normal. He said he didn’t need to see me till next year.
I have been overweight and wanted to drop some weight. I went on Waygovy in February. I was losing weight and then began to experience frequent constipation and diarrhea. I stayed on it for a few months lost 14 lbs. I wound up with a flu and then the night sweats started. I went off Waygovy 2 months ago. I feel a lot better off it.
No more diarrhea. But I did notice I have a lot of back ache in my lumbar and upper back. Also every night now I wake up around 4am with a fast beating heart. I think the Waygovy brought on Amyloidois. I reached out to my Dr and he is on vacation so I went to another Dr to get some blood tests. My light free chain is elevated. I really hope I didn’t fast foward this blood disease with the Waygovy.

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I don’t think there is any connection. I saw a recent study out of Dana Farber and Irene Ghobriel where that drug or a similar one turned out to be protective in MGUS patients.
There are many possible reasons your FLC may have gone up including an infection or other inflammatory cause.
The same is true for your back and heart rate. Don’t borrow “trouble.” But it is smart to get everything checked out thoroughly so you feel more relaxed.
I have had MGUS for 23 years and it has been a roller coaster ride. I have a different hematologist now and his “calmness” makes a difference.
Best wishes! You may never progress!

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Very interesting about Waygovy. I too have MGUS and have been on Monjaro for 7 months. My platelets and WBC numbers have gone way done (not good) from right before I went on Monjaro. I am wondering if there is a possible correlation. These weight loss drugs are so new, they really don't know.

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Profile picture for hsminc @hsminc

I don’t think there is any connection. I saw a recent study out of Dana Farber and Irene Ghobriel where that drug or a similar one turned out to be protective in MGUS patients.
There are many possible reasons your FLC may have gone up including an infection or other inflammatory cause.
The same is true for your back and heart rate. Don’t borrow “trouble.” But it is smart to get everything checked out thoroughly so you feel more relaxed.
I have had MGUS for 23 years and it has been a roller coaster ride. I have a different hematologist now and his “calmness” makes a difference.
Best wishes! You may never progress!

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Glad to hear you’ve had MGUS 23 years! I’m going on 4 years myself.
Can you share how it’s been a roller coaster for you? Thanks, and here’s to many more years of stability.

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Profile picture for karenfouquet @karenfouquet

Hi I was diagnosed with MGUS last year by my neurologist. He sent me to my hematologist. He was checking my blood every 4 months and now when he checked it in Jan, everything was quite normal. He said he didn’t need to see me till next year.
I have been overweight and wanted to drop some weight. I went on Waygovy in February. I was losing weight and then began to experience frequent constipation and diarrhea. I stayed on it for a few months lost 14 lbs. I wound up with a flu and then the night sweats started. I went off Waygovy 2 months ago. I feel a lot better off it.
No more diarrhea. But I did notice I have a lot of back ache in my lumbar and upper back. Also every night now I wake up around 4am with a fast beating heart. I think the Waygovy brought on Amyloidois. I reached out to my Dr and he is on vacation so I went to another Dr to get some blood tests. My light free chain is elevated. I really hope I didn’t fast foward this blood disease with the Waygovy.

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Have you had a bone marrow biopsy done? I have had Primary Amyloidosis for 3 years. It was not detected in any blood tests. I was anemic and bleeding and bruising easily, so my hemotologist did a bone marrow biopsy and that is where the Amyloidosis was detected.
It's been a roller coaster ride, but I am alive and have good quality of life. Best wishes to you. Please don't let the Amyloidosis go untreated.

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Profile picture for gchat @gchat

Have you had a bone marrow biopsy done? I have had Primary Amyloidosis for 3 years. It was not detected in any blood tests. I was anemic and bleeding and bruising easily, so my hemotologist did a bone marrow biopsy and that is where the Amyloidosis was detected.
It's been a roller coaster ride, but I am alive and have good quality of life. Best wishes to you. Please don't let the Amyloidosis go untreated.

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No, I have not had a bone marrow biopsy. I have been going to all kinds of Dr’s. My liver enzymes, AST, bilirubin, ALT have all come back abnormal. I’m having a CAT on my liver. I’m not going to let this go untreated. I really feel it is Amyloidosis. I’ll get to the bottom of this. Thank you for responding to me.

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Profile picture for karenfouquet @karenfouquet

No, I have not had a bone marrow biopsy. I have been going to all kinds of Dr’s. My liver enzymes, AST, bilirubin, ALT have all come back abnormal. I’m having a CAT on my liver. I’m not going to let this go untreated. I really feel it is Amyloidosis. I’ll get to the bottom of this. Thank you for responding to me.

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We’re there more symptoms then the anemia and bruising?

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