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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@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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@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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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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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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@mascot

A lot more(250) lambda, 20%in bone marrow and the checkup is next week so will find out more then!
Mascot

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Hi @mascot. I received my bone marrow biopsy and am 22%. I am "Smoldering" as well per the hematologist. How did your checkup go?

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@leslie2121

Ginger:
I wasn’t wanting more frequent appointments and was actually thrilled with the positive direction the labs are taking.
And I do plan to keep seeing the specialist- though he said he could direct a pcp in what exactly to look for, but I don’t have a super great pcp so will keep seeing the MM doc.

Anyway- I am baffled why things got better! I have had a pretty healthy diet, and exercise regularly with long walks up hills, gardening & housework. I’ve added some supplements?
Maybe stress related?

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@leslie2121 Oh, stress can definitely play a big part in our health! Sometimes it sneaks up and we don't realize the part it is playing.
Ginger

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@gingerw

@leslie2121 I personally wouldn't look at the result of one set of labs as a concern. Look at the trend. You mentioned you will go back in 6 months. If there is any reason you don't feel comfortable with that, ask to be seen at three months.

And, as Patty @pmm mentioned, stick with your hematologist/oncologist, please. They are better educated and better equipped to address concerns that may arise, and "catch" a change.

Good to hear that fatigue, dizziness, depression seems to be lifting for you. There can be many small reasons for these symptoms, that come together and can create a larger presence. What can you think of that has helped you get over these hurdles? Diet change? More/different exercises? Mindful work to address the issues? Just curious, and it might help others!
Ginger

Jump to this post

Ginger:
I wasn’t wanting more frequent appointments and was actually thrilled with the positive direction the labs are taking.
And I do plan to keep seeing the specialist- though he said he could direct a pcp in what exactly to look for, but I don’t have a super great pcp so will keep seeing the MM doc.

Anyway- I am baffled why things got better! I have had a pretty healthy diet, and exercise regularly with long walks up hills, gardening & housework. I’ve added some supplements?
Maybe stress related?

REPLY
@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! 🥹

Jump to this post

@leslie2121 I personally wouldn't look at the result of one set of labs as a concern. Look at the trend. You mentioned you will go back in 6 months. If there is any reason you don't feel comfortable with that, ask to be seen at three months.

And, as Patty @pmm mentioned, stick with your hematologist/oncologist, please. They are better educated and better equipped to address concerns that may arise, and "catch" a change.

Good to hear that fatigue, dizziness, depression seems to be lifting for you. There can be many small reasons for these symptoms, that come together and can create a larger presence. What can you think of that has helped you get over these hurdles? Diet change? More/different exercises? Mindful work to address the issues? Just curious, and it might help others!
Ginger

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@pmm

@leslie2121
Oh I’m glad to hear you found a good LCSW match. This is Social Work month. Another reason to celebrate.
Stress can be crippling. For me, it makes me feel physically weak and even nauseous. Getting a handle on that is no small feat.

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Amazing how the mind and body are so intertwined!

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@leslie2121

Good question!
If from an outside source then my own body may recover with time and rest.
2. Intentional stress reduction allowed my immune system to respond.
3. Curcumin? But I think it was already getting better.

As far as the depression (and anxiety), I did seek out an excellent LCSW with the oncology team. Yay to therapy! The psychiatrist didn’t recommend meds as it was an adjustment disorder. But I wonder…

Jump to this post

@leslie2121
Oh I’m glad to hear you found a good LCSW match. This is Social Work month. Another reason to celebrate.
Stress can be crippling. For me, it makes me feel physically weak and even nauseous. Getting a handle on that is no small feat.

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