Swanstarr,
I might suggest starting a new thread on this topic.
I'm also unclear what your current situation is. Are you saying that you originally had a diagnosis of POEMS and were treated with Revlimid, only to later find out that this diagnosis was wrong and that you instead now have a diagnosis of MGUS (per the Mayo Clinic)? I'm assuming that the Mayo Clinic ran all the standard POEMS diagnostic tests, which aren't exactly the same as those used with diagnosing multiple myeloma - and that you had a bone marrow biopsy?
Immunoglobulin levels by themselves don't tell a person much with respect to an MGUS diagnosis. You need to also be looking at a lot of different things, including serum free light chains, M-spike, beta2 microglobulin, hemoglobin, creatinine, serum calcium, etc.
I'm also unclear if your immunoglobulin levels have all been normal over the period you documented because of Revlimid treatment or if they were always that way?
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed with MGUS - what should I expect?
Hi Micki,
My wife was diagnosed with MGUS 13 years ago. She's never felt anything physically, had annual blood tests and visit to hematologist with no change....until this year. Her protein levels increased to the point that she's had a full workup and is about to have a stem cell transplant.
Had we known then what we know now we would have asked more detailed questions about her immunoglobulin levels. They only tested for her light/heavy chain levels after the M protein spiked significantly this year.
Hopefully you'll be lucky enough that your MGUS doesn't progress any further.
My wife was diagnosed with MGUS 13 years ago. She's never felt anything physically, had annual blood tests and visit to hematologist with no change....until this year. Her protein levels increased to the point that she's had a full workup and is about to have a stem cell transplant.
Had we known then what we know now we would have asked more detailed questions about her immunoglobulin levels. They only tested for her light/heavy chain levels after the M protein spiked significantly this year.
Hopefully you'll be lucky enough that your MGUS doesn't progress any further.
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SK1 - Name: SK
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 62
Re: Just diagnosed with MGUS - what should I expect?
I think the idea of going to Mayo is a good idea. I had no real symptoms except that I have had fibromyalgia and small fiber neuropathy for years, and my neurologist does a full battery of tests every year to see if he can put my puzzle together.
This year I had the M-spike, but the oncologist said that since the M-spike just recently appeared (I have never had it before) and the other symptoms go way back, it can't be the cause of the neuropathy in this case.
So I am still waiting for the results of my bone marrow biopsy, still have neuropathy and not many answers, just more questions.
This year I had the M-spike, but the oncologist said that since the M-spike just recently appeared (I have never had it before) and the other symptoms go way back, it can't be the cause of the neuropathy in this case.
So I am still waiting for the results of my bone marrow biopsy, still have neuropathy and not many answers, just more questions.
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Micki529 - Name: Micki529
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 67
Re: Just diagnosed with MGUS - what should I expect?
I had my appointment today. My bone marrow biopsy was very low. She said not at all significant, to the point where she would almost hesitate to call my condition MGUS except for the M-spike.
She wants me to go to a rheumatologist because of positive ANA . Also, on the skeletal X-ray, they saw knee problems, joint problems, and spinal stenosis, but NO lesions. So still no answers as to why I have this terrible neuropathy, but I do think this report is good news. I have to do follow-up blood work next summer just to make sure no changes.
Is there ever an M-spike related to auto immune diseases?
She wants me to go to a rheumatologist because of positive ANA . Also, on the skeletal X-ray, they saw knee problems, joint problems, and spinal stenosis, but NO lesions. So still no answers as to why I have this terrible neuropathy, but I do think this report is good news. I have to do follow-up blood work next summer just to make sure no changes.
Is there ever an M-spike related to auto immune diseases?
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Micki529 - Name: Micki529
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 67
Re: Just diagnosed with MGUS - what should I expect?
Hi Micki,
That's good news about your BMB results.
Do you know what your bone marrow plasma percentage was from the BMB? Between the various tests that are performed during a BMB (flow cytometry, microscopic inspection, etc) and the bone marrow plasma percentage, I believe it should have been clear whether or not your M-spike was due to MGUS or not.
To answer your specific question about the cause of M-spikes, there are some autoimmune diseases that can apparently sometimes cause paraproteinemia (an M-spike). I am admittedly surprised by this and I am still trying to sort this out. See:
http://patient.info/doctor/paraproteinaemia
Regarding your ANA test, you may want to read this paper regarding fibromyalgia and ANA testing.
http://www.prohealth.com/library/showarticle.cfm?libid=8463
And this is a good article wrt neuropathy and fibromyalgia (your current FMS diagnosis might account for your neuropathy?):
http://www.painresearchforum.org/news/33529-multiple-studies-one-conclusion-some-fibromyalgia-patients-show-peripheral-nerve
Again, I'm not a doc, so please check with yours regarding everything I've said here.
That's good news about your BMB results.
Do you know what your bone marrow plasma percentage was from the BMB? Between the various tests that are performed during a BMB (flow cytometry, microscopic inspection, etc) and the bone marrow plasma percentage, I believe it should have been clear whether or not your M-spike was due to MGUS or not.
To answer your specific question about the cause of M-spikes, there are some autoimmune diseases that can apparently sometimes cause paraproteinemia (an M-spike). I am admittedly surprised by this and I am still trying to sort this out. See:
http://patient.info/doctor/paraproteinaemia
Regarding your ANA test, you may want to read this paper regarding fibromyalgia and ANA testing.
http://www.prohealth.com/library/showarticle.cfm?libid=8463
And this is a good article wrt neuropathy and fibromyalgia (your current FMS diagnosis might account for your neuropathy?):
http://www.painresearchforum.org/news/33529-multiple-studies-one-conclusion-some-fibromyalgia-patients-show-peripheral-nerve
Again, I'm not a doc, so please check with yours regarding everything I've said here.
Last edited by Multibilly on Fri Nov 20, 2015 4:47 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed with MGUS - what should I expect?
I am going to check out those links tomorrow.
It says politypic plasma cells >0.1%. Is that what you asked? In another place, it says 1% plasma cells. She really explained it to me carefully, showing me the readings on the computer screen and gave me a print out, but as far as this goes I guess I am pretty dense.
The summary says" the lymphocyte immunophenoytypic findings show no diagnostic abnormalities."
The main thing she said was it was good, happy thanksgiving, and come back in the summer to keep track of it.
She did say something about an autoimmune disorder, which can deteriorate the myelin sheath on the nerves. So I guess I have to start searching about that.
It says politypic plasma cells >0.1%. Is that what you asked? In another place, it says 1% plasma cells. She really explained it to me carefully, showing me the readings on the computer screen and gave me a print out, but as far as this goes I guess I am pretty dense.
The summary says" the lymphocyte immunophenoytypic findings show no diagnostic abnormalities."
The main thing she said was it was good, happy thanksgiving, and come back in the summer to keep track of it.
She did say something about an autoimmune disorder, which can deteriorate the myelin sheath on the nerves. So I guess I have to start searching about that.
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Micki529 - Name: Micki529
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 67
Re: Just diagnosed with MGUS - what should I expect?
This all sounds good to me, but I'm not a doctor.
Polytypic plasma cells are what's normal. Monotypic cells are what occurs with a monoclonal gammopathy.
Your bone marrow marrow plasma cell % (BMPC) is probably the 1% figure you mentioned, which is also good (less than 5% is normal).
Flow cytometry performs immunophenotyping, which essentially tells you which antigens (aka clusters of differentiation) appear on your cells' surfaces. Folks with a monoclonal gammopathy typically have different mixes of clusters of differentiation and/or more of some clusters of differentiation presented on their cells' surfaces than do normal folks. Your results appear to be normal from the summary you shared.
I think I understand why your doc would almost hesitate to call your condition MGUS, except for the presence of an M-spike.
I'll be curious what the rheumatologist has to say.
Polytypic plasma cells are what's normal. Monotypic cells are what occurs with a monoclonal gammopathy.
Your bone marrow marrow plasma cell % (BMPC) is probably the 1% figure you mentioned, which is also good (less than 5% is normal).
Flow cytometry performs immunophenotyping, which essentially tells you which antigens (aka clusters of differentiation) appear on your cells' surfaces. Folks with a monoclonal gammopathy typically have different mixes of clusters of differentiation and/or more of some clusters of differentiation presented on their cells' surfaces than do normal folks. Your results appear to be normal from the summary you shared.
I think I understand why your doc would almost hesitate to call your condition MGUS, except for the presence of an M-spike.
I'll be curious what the rheumatologist has to say.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed with MGUS - what should I expect?
There are a couple of points that have come up in this discussion that I would like to comment on.
First, hovering in the background of this discussion has been a question:
Can something other than MGUS, multiple myeloma, or another plasma cell disorder cause an M-spike or positive serum immunofixation result?
In general, the underlying clinically important cause of a monoclonal protein is a plasma cell or a B cell disorder. However, low level monoclonal (M) protein that typically lasts for a short period of time can occasionally be seen with inflammation or immunodeficiencies.
A variety of clinical conditions can coincidently coexist in patients with monoclonal gammopathy. These include autoimmune disorders, certain skin conditions, infections, liver diseases and other cancers such as colon cancer, prostate cancer lung cancer and blood cancers, etc.
Also, I get the sense from this and similar discussions here in the forum that many feel a bone marrow biopsy is a must when someone is found to have an M-spike or positive serum immunofixation. This isn't really so. A marrow biopsy is appropriate in certain circumstances:
I hope this is helpful, and I wish everyone a Happy Thanksgiving.
First, hovering in the background of this discussion has been a question:
Can something other than MGUS, multiple myeloma, or another plasma cell disorder cause an M-spike or positive serum immunofixation result?
In general, the underlying clinically important cause of a monoclonal protein is a plasma cell or a B cell disorder. However, low level monoclonal (M) protein that typically lasts for a short period of time can occasionally be seen with inflammation or immunodeficiencies.
A variety of clinical conditions can coincidently coexist in patients with monoclonal gammopathy. These include autoimmune disorders, certain skin conditions, infections, liver diseases and other cancers such as colon cancer, prostate cancer lung cancer and blood cancers, etc.
Also, I get the sense from this and similar discussions here in the forum that many feel a bone marrow biopsy is a must when someone is found to have an M-spike or positive serum immunofixation. This isn't really so. A marrow biopsy is appropriate in certain circumstances:
- In all patients with an M-spike equal to or greater than 1.5 g/dL (15 g/L),
- In patients with a non-IgG M-spike of any size,
- In patients with an abnormal serum free light chain ratio,
- In all patients who have any abnormalities of the complete blood count (CBC), serum creatinine, serum calcium, or a bone survey.
I hope this is helpful, and I wish everyone a Happy Thanksgiving.
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Dr. Prashant Kapoor - Name: Prashant Kapoor, M.D.
Beacon Medical Advisor
Re: Just diagnosed with MGUS - what should I expect?
Dr. Kapoor,
As always, your posts provide a great deal of clarity to the often confusing world of monoclonal gammopathies. Happy Thanksgiving to you and all the wonderful people at the Mayo!
As always, your posts provide a great deal of clarity to the often confusing world of monoclonal gammopathies. Happy Thanksgiving to you and all the wonderful people at the Mayo!
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed with MGUS - what should I expect?
I was diagnosed with IgA MGUS (less than 0.3 g/dL) 2 years ago and we did not do a bone marrow biopsy. The M-spike has remained stable all this time as well as my free light chain ratio of of 4 (41/10). All CBC and CRAB metrics are good and steady. No bone issues. I am on follow ups yearly now.
We are being followed by the head of the myeloma department at MD Anderson in Houston.
Happy Thanksgiving to all,
mike
We are being followed by the head of the myeloma department at MD Anderson in Houston.
Happy Thanksgiving to all,
mike
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Cedb
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