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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I just did a bone marrow biopsy and mine came back at 22%. My M-Spike was 1.9 g/dL, then 1.67, and finally 1.64. Beta-2 Microglobulin between 2.2 and 2.4. IgG 2326, IgA 20, IgM 29 (apparently not good when A/M are falling and G rising). I am now classified as Smoldering Myeloma unfortunately, but no idea how long since all of this is since October or so.

One item I do not understand at all, nor from my non-English speaking doctor (I live in Spain), is what the genetic test results mean. Does anyone understand the following at all? There are different clinical trials and depending on whether I have a p53 mutation, Gain 1q, etc, I may qualify, but I haven't a clue what the following means:

Determination of the presence of chromosomal alterations associated with multiple myeloma prognosis. Commercial probes: SureFISH TP53 (17p13.1)/SureFISH Chr17 CEP (D17Z1); and SureFISH 14q32.33 IGH 3' BA/SureFISH 14q32.33 IGH 5' BA from CD138+ mononucleated cells separated using MicroBeads.
Adequate sample for the evaluation of the study.
Assessment
100 cores analyzed,
LOH TP53 (17p13.1): Detected in 9% of the nuclei analyzed. nuc ish(TP53x1,D17Z1x2) [9/100]. (See notes)
100 cores analyzed,
IGH gene translocation: Not detectable in the nuclei analyzed. nuc ish(IGHx2)[100]

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Looks like they found the TP 53 mutation in only 9% of the cells. I don’t see anything else.
The significance of this small amount isn’t clear.

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@leslie2121

Patty:
You are kind to always respond, and I recognize I could be more focused on gratitude and the positive direction things seem to be going.
Part of my persistence in researching this is hoping to be as healthy as possible for as long as I can.
I think the turmeric/curcumin supplements may be helping, and I wouldn’t have known about trying that if I hadn’t done my own research.
I also wonder ( and this is controversial!) what role the mRNA vaccine had in this. I believe in the benefits of vaccines- I even spent a few weeks volunteering to give shots for the County Medical Association during the pandemic, partly to get mine a little early. ( was an RN for my first career) I don’t think anyone was conspiring, and it ended the worst of the pandemic thankfully!

But for a few susceptible individuals it may have triggered autoimmune disorders, kidney inflammation and/or nephrotic syndrome and plasma cell dycrasias.
There are a few studies just now being released online that the public can access that suggest this. I also have a family history of autoimmune disease as well as myself.

I don’t understand what “small peaks in several lanes” means. My doctor drew the SPEP for normal, and for MGUS. It’s a distinct sharp spike that indicates a monoclonal gammopathy. I don’t have that - just several little bumps in gamma area.. He was frankly baffled and said the only way to know is to do another BMB and it wasn’t warranted.

I’ve had significant fatigue, dizziness, and frankly some depression the past 2 years which has been slowly resolving. Trying to look forward now.

I appreciate this supportive group very much and wish you the best! 🥹

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@leslie2121 - you said, "But for a few susceptible individuals [the mRNA vaccine] may have triggered autoimmune disorders, kidney inflammation and/or nephrotic syndrome and plasma cell dycrasias. There are a few studies just now being released online that the public can access that suggest this."

Do you have the link(s) to those studies? TIA.

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@kappaking

@leslie2121 - you said, "But for a few susceptible individuals [the mRNA vaccine] may have triggered autoimmune disorders, kidney inflammation and/or nephrotic syndrome and plasma cell dycrasias. There are a few studies just now being released online that the public can access that suggest this."

Do you have the link(s) to those studies? TIA.

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I’ll try to find them.

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I looked for the covid vaccine triggering plasma cell dycrasias @leslie2121 and @kappaking and found a number of research papers on effects of covid vaccine on people that ALREADY have dyscrasias. Also, if a publication has "may" it means it is not a conclusion, more a possibility (I'm a research scientist and have also reviewed a lot of papers). Vaccines are designed to ramp up your immune system so it can be vigilant for invaders. Our personal home security system. Could autoimmune diseases be triggered by some vaccines in genetically or otherwise susceptible people? Time and research will tell so it is important to keep searching for information. Autoimmune diseases can potentially be triggered by a number of things, Reactive Arthritis by chlamydia, Lyme disease from bacteria, viruses, pregnancy, and other stressors. Here is one on the covid vaccine NOT impacting MGUS: https://ashpublications.org/blood/article/140/Supplement%201/261/487616/Sars-Cov-2-Vaccinations-Do-Not-Lead-to-Progression This "online library" paper is not research, it is more a pondering, looking at common effects on the body of covid and other diseases/conditions. Perhaps that is the link between covid and afflictions that you were referring to? There is no controlled study, just suggestions, which are fine but need actual research to see if there real links. https://onlinelibrary.wiley.com/doi/10.1002/iid3.701 . Starting with the Obama administration all Fed. govt funded research papers have to be available to the public within a year of publication; the upside of that is there is a lot of great medical and other info out there. Downsides are they are mostly written in to scientists so not as easy for the public to read, analyze, or interpret them.

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@kayabbott

I looked for the covid vaccine triggering plasma cell dycrasias @leslie2121 and @kappaking and found a number of research papers on effects of covid vaccine on people that ALREADY have dyscrasias. Also, if a publication has "may" it means it is not a conclusion, more a possibility (I'm a research scientist and have also reviewed a lot of papers). Vaccines are designed to ramp up your immune system so it can be vigilant for invaders. Our personal home security system. Could autoimmune diseases be triggered by some vaccines in genetically or otherwise susceptible people? Time and research will tell so it is important to keep searching for information. Autoimmune diseases can potentially be triggered by a number of things, Reactive Arthritis by chlamydia, Lyme disease from bacteria, viruses, pregnancy, and other stressors. Here is one on the covid vaccine NOT impacting MGUS: https://ashpublications.org/blood/article/140/Supplement%201/261/487616/Sars-Cov-2-Vaccinations-Do-Not-Lead-to-Progression This "online library" paper is not research, it is more a pondering, looking at common effects on the body of covid and other diseases/conditions. Perhaps that is the link between covid and afflictions that you were referring to? There is no controlled study, just suggestions, which are fine but need actual research to see if there real links. https://onlinelibrary.wiley.com/doi/10.1002/iid3.701 . Starting with the Obama administration all Fed. govt funded research papers have to be available to the public within a year of publication; the upside of that is there is a lot of great medical and other info out there. Downsides are they are mostly written in to scientists so not as easy for the public to read, analyze, or interpret them.

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Thank you kayabbot - I’m also from a medical background and found those studies you cited and know how research works. I appreciate the explanation though.
I have inferred the connection between the mRNA vaccines I took and the changes in my health - it’s only a theory and time will tell.
Or I’ll never know? My MM doc said we’ll know in 20-30 years if there’s a connection. I got the feeling he’s been asked that before!
As I said, I think the vaccines overwhelmingly worked to save many lives- only just a few who may have had changes in their immune system beyond the expected Covid immunity.

I will look for the studies that led me to start thinking that there might be causation and post here.
My own condition is now being explained as possibly not MGUS or something similar that could be resolving.

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“Monoclonal gammopathy results from clonal proliferation of plasma cells or antibody secreting B-cells, producing large amounts of homogenous immunoglobulin or light chain fragments. An “acute” or transitory monoclonal spike has been reported in association with a spectrum of acute and chronic inflammatory illnesses, including viral infections.“
https://www.htct.com.br/en-acute-monoclonal-gammopathy-in-severe-articulo
S253113792030064X

* This pertains to an M spike found in 2 older patients who actually had a severe Covid infection.

Stay tuned for more…😄

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@leslie2121

“Monoclonal gammopathy results from clonal proliferation of plasma cells or antibody secreting B-cells, producing large amounts of homogenous immunoglobulin or light chain fragments. An “acute” or transitory monoclonal spike has been reported in association with a spectrum of acute and chronic inflammatory illnesses, including viral infections.“
https://www.htct.com.br/en-acute-monoclonal-gammopathy-in-severe-articulo
S253113792030064X

* This pertains to an M spike found in 2 older patients who actually had a severe Covid infection.

Stay tuned for more…😄

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https://www.mdpi.com/2075-1729/13/3/734
This was a stable patient who had MGRS and relapsed after getting her 2nd Moderna vaccine- resulting in an acute worsening kidney disease and hemodialysis for the rest of her life.

I look at these as smoking guns- not proof- but worthy of exploring further.

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https://iris.uniroma1.it/retrieve/e383532d-0a89-15e8-e053-a505fe0a3de9/Farina_Transient-plasma_2021.pdf
This is an Italian study - again shows a monoclonal gammopathy found unexpectedly in Covid patients and tries to explain what might be causing this.

* I didn’t get an covid infection before the MGUS was found, just the vaccines. When I did, it was mild and caused no lasting effects.

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@leslie2121

https://iris.uniroma1.it/retrieve/e383532d-0a89-15e8-e053-a505fe0a3de9/Farina_Transient-plasma_2021.pdf
This is an Italian study - again shows a monoclonal gammopathy found unexpectedly in Covid patients and tries to explain what might be causing this.

* I didn’t get an covid infection before the MGUS was found, just the vaccines. When I did, it was mild and caused no lasting effects.

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10253807/#:~:text=In%20conclusion%2C%20abnormal%20levels%20of,prognostic%20biomarkers%20of%20selected%20diseases.
* Last one:
General study of elevated FLCs and autoimmune and inflammatory type disorders.

Maybe the anti inflammatory supplements (curcumin, cherry tart extract, omega 3s) I’ve been taking have helped me?
I just want to be as healthy as possible and have an open mind.
✌🏻

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