Hello,
I was being tested for celiac disease by my rheumatologist through a blood panel. She found that I had an M-spike (0.9 g/dL, or 9 g/l) with elevated IgA (1441 mg/dL). During the time I was tested, I had terrible GI issues, diarrhea and cramping, and a high level of anxiety and stress for months. I have always had ANA's in my blood but never enough to be diagnosed with an autoimmune disease.
Recently, I had to have an emergency appendectomy and was given powerful antibiotics. My GI issues have completely resolved and I feel great. After my surgery, my rheumatologist referred me to a hematologist / oncologist, who immediately said because of my age and absence of "CRAB" symptoms that I have MGUS. He said this without running further blood testing. He wants me to do the full work up now – blood test, full body X-ray scan, urine collection, and bone marrow biopsy.
I'm upset because he completely dismissed the acute GI infection I had and told me that I needed the full body work up and to be watched and tested annually for progression. I think it's a bit absurd considering my age, and that it's something that has a very small percentage of turning into myeloma and even that would take a long time.
I know there are some people out there who have been diagnosed at a young age, but am I wrong to think its unethical to scare younger people like this? Is this something people my age should even be tested for? My primary doesn't think I should worry about this and that it was probably from an acute infection I had. Are there any other people who have gone through this?
I'm a 31 year old female.
These findings were abnormal and from April 2016:
Beta 2 Globulin - 1.2 g/dL (high)
Abnormal Protein Band 1 - 0.9 g/dL (high)
Immunoglobulin A 1441 mg/dl (high)
Immunoglobulin G - 772 mg/dl (normal)
Immunoglobulin M - 29 mg/dl (low)
Immunofixation, serum - Interpretation - IgA lambda monoclonal band present.
Vitamin D - 65 ng/mL (normal)
Forums
Re: Too young for MGUS
Tmallory,
I would hardly say that your hematologist is being unethical by wanting to do a full set of tests to correctly diagnose your plasma cell disorder and get to the bottom of why you have an IgA M-spike of 0.9 g/dL.
While your M-spike isn't that large, 0.9 g/dL isn't exactly a trivial value either – and your immunofixation test confirms that the pop in your IgA level is because you have monoclonal IgA in your system (infections cause polyclonal increases in immunoglobulins, not monoclonal increases).
Additionally, IgA MGUS patients tend to transition to active multiple myeloma more often than do IgG MGUS patients.
Lastly, your IgM level is suppressed – a condition known as "immunoparesis" – which can further suggest a diagnosis of MGUS or smoldering multiple myeloma, and places you at a higher risk of progressing to active multiple myeloma
So, again, I hardly think your hematologist was out of bounds by suggesting a more complete workup and routine monitoring.
Yes,multiple myeloma tends to hit older folks more than younger folks, but people your age can absolutely develop full blown multiple myeloma and have succumbed to it. To drive home the point, Terrij just recently and tragically lost her 36-year old daughter to multiple myeloma.
It's always your choice whether to dig into this more and keep an eye on the disease or not. Some on this forum wish they never new they had an MGUS diagnosis and were instead kept in the dark until the disease transformed into full-blown multiple myeloma. Personally, I'd rather know about a pre-cancerous situation upfront and keep an eye on it, and I'm grateful that my doctor caught my situation early (I'm smoldering).
I would hardly say that your hematologist is being unethical by wanting to do a full set of tests to correctly diagnose your plasma cell disorder and get to the bottom of why you have an IgA M-spike of 0.9 g/dL.
While your M-spike isn't that large, 0.9 g/dL isn't exactly a trivial value either – and your immunofixation test confirms that the pop in your IgA level is because you have monoclonal IgA in your system (infections cause polyclonal increases in immunoglobulins, not monoclonal increases).
Additionally, IgA MGUS patients tend to transition to active multiple myeloma more often than do IgG MGUS patients.
Lastly, your IgM level is suppressed – a condition known as "immunoparesis" – which can further suggest a diagnosis of MGUS or smoldering multiple myeloma, and places you at a higher risk of progressing to active multiple myeloma
So, again, I hardly think your hematologist was out of bounds by suggesting a more complete workup and routine monitoring.
Yes,multiple myeloma tends to hit older folks more than younger folks, but people your age can absolutely develop full blown multiple myeloma and have succumbed to it. To drive home the point, Terrij just recently and tragically lost her 36-year old daughter to multiple myeloma.
It's always your choice whether to dig into this more and keep an eye on the disease or not. Some on this forum wish they never new they had an MGUS diagnosis and were instead kept in the dark until the disease transformed into full-blown multiple myeloma. Personally, I'd rather know about a pre-cancerous situation upfront and keep an eye on it, and I'm grateful that my doctor caught my situation early (I'm smoldering).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Too young for MGUS
Hi tmallory10,
I tend to agree with everything Multibilly said and I'd just add that I think it's fortunate that your hematologist / oncologist is recommending further testing because oftentimes the challenge is getting a general hematologist / oncologist (i.e., not a myeloma / amyloidosis / macroglobulinemia specialist) to take your concerns seriously if you're a younger person. Most hematologist / oncologists see a relatively small number of patients with plasma cell disorders and so they tend to easily dismiss cases that don't fit the absolute text book presentations for these illnesses, but who may have a plasma cell disorder nonetheless (i.e., people who are young, people with light chain-only abnormalities, people with exceedingly small M-proteins, etc.).
Furthermore, while your doc's assertion that you don't have myeloma is probably correct given the lack of CRAB criteria, there are other very dangerous plasma cell conditions like AL amyloidosis that don't generally conform to the CRAB criteria rules and really should be ruled out.
Best of luck!
I tend to agree with everything Multibilly said and I'd just add that I think it's fortunate that your hematologist / oncologist is recommending further testing because oftentimes the challenge is getting a general hematologist / oncologist (i.e., not a myeloma / amyloidosis / macroglobulinemia specialist) to take your concerns seriously if you're a younger person. Most hematologist / oncologists see a relatively small number of patients with plasma cell disorders and so they tend to easily dismiss cases that don't fit the absolute text book presentations for these illnesses, but who may have a plasma cell disorder nonetheless (i.e., people who are young, people with light chain-only abnormalities, people with exceedingly small M-proteins, etc.).
Furthermore, while your doc's assertion that you don't have myeloma is probably correct given the lack of CRAB criteria, there are other very dangerous plasma cell conditions like AL amyloidosis that don't generally conform to the CRAB criteria rules and really should be ruled out.
Best of luck!
Re: Too young for MGUS
Dear Tmallory,
I doubt any doctor would put a patient through tests of any kind without reason. I think your doctor should be applauded for being onto it. For many on this forum, it took weeks, months, or years in some cases to get a doctor to test or diagnose them correctly.
It took a lot of nagging my GP for her to refer me. When I told her the results of the further testing, being that I have multiple myeloma. She said (and I quote), "No you don't; you're too young to have multiple myeloma."
So whilst it may not be what you want to hear, at least your doctor is trying to find out what may be wrong with you. Hopefully it will be nothing major.
I guess my other point is no, you're not too young.
I doubt any doctor would put a patient through tests of any kind without reason. I think your doctor should be applauded for being onto it. For many on this forum, it took weeks, months, or years in some cases to get a doctor to test or diagnose them correctly.
It took a lot of nagging my GP for her to refer me. When I told her the results of the further testing, being that I have multiple myeloma. She said (and I quote), "No you don't; you're too young to have multiple myeloma."
So whilst it may not be what you want to hear, at least your doctor is trying to find out what may be wrong with you. Hopefully it will be nothing major.
I guess my other point is no, you're not too young.
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Too young for MGUS
I know how you feel. I was diagnosed with MGUS when I was 25 (I'm 26 now). I think it's good your doctor is following through with this, but I completely agree on the panic mode that oncologists / hematologists place on people as young as us.
My GP full out told me he thinks I have multiple myeloma, because he didn't bother converting the units correctly. Who does that?
My hematologist makes me do 24-hour urine collection twice a year, which I think is absolutely insane. I even had to do a full body skeletal survey. My M-spike is a bit below yours, so I don't think it is warranted. I don't think anything beyond simple blood work is warranted. With that said, do it once and then when you know you have no lesions or anything else out of ordinary - just relax. Perhaps you can negotiate with your doctor about having less frequent appointments.
Hopefully your M-spike was actually caused by an acute infection, it disappears, and you will be back to normal. There are some posts on this forum (the MGUS one) about people whose M-spike went away on its own.
For what it's worth, I think the prevalence of MGUS (maybe transient MGUS) is much higher than it is assumed to be in younger people because young people don't get tested for things that often. My friends don't go to the doctors as much as older people do. Perhaps if we had true numbers, we could speculate better on chances of progression and spontaneous remission.
Given MGUS is not treated, and multiple myeloma has no cure, I do wish I never knew I had it. I think knowing about the possibility of this thing just killing me has affected my quality of life.
My GP full out told me he thinks I have multiple myeloma, because he didn't bother converting the units correctly. Who does that?
My hematologist makes me do 24-hour urine collection twice a year, which I think is absolutely insane. I even had to do a full body skeletal survey. My M-spike is a bit below yours, so I don't think it is warranted. I don't think anything beyond simple blood work is warranted. With that said, do it once and then when you know you have no lesions or anything else out of ordinary - just relax. Perhaps you can negotiate with your doctor about having less frequent appointments.
Hopefully your M-spike was actually caused by an acute infection, it disappears, and you will be back to normal. There are some posts on this forum (the MGUS one) about people whose M-spike went away on its own.
For what it's worth, I think the prevalence of MGUS (maybe transient MGUS) is much higher than it is assumed to be in younger people because young people don't get tested for things that often. My friends don't go to the doctors as much as older people do. Perhaps if we had true numbers, we could speculate better on chances of progression and spontaneous remission.
Given MGUS is not treated, and multiple myeloma has no cure, I do wish I never knew I had it. I think knowing about the possibility of this thing just killing me has affected my quality of life.
Re: Too young for MGUS
I don't know how much urgency there is with your particular situation. Telling someone they suddenly have to have all these tests done is a lot. Some people - like me! - need things broken down into small digestible parts. I opted for 3 rounds of blood tests over 9 months before moving to a bone marrow biopsy. You can discuss this with your hematologist and see where you should start and how long you can wait between tests to catch your breath if you are getting overwhelmed. Plus you get a chance to see what your results are before going off to the next test. Your situation is different from mine, so you and your doctor can best decide.
Re: Too young for MGUS
Hello TMallory,
You've already gotten a lot of useful advice. I just want to add that, although I'm by no means an expert, it is very unlikely that an M-spike that measures 0.9 g/dL (9 g/l) is due to an infection. As a result, it's very unlikely that the M-spike will go away on its own.
As Multibilly pointed out, when infections increase protein levels in your blood, the increase is usually "polyclonal". This means the increase appears across a broad range of protein types on the SPEP graph, rather than as one or two clear "spikes" in the graph.
When there's a spike in the SPEP graph, it's a sign the increased protein is due to the presence of "monoclonal" proteins. In your case, the presence of monoclonal proteins is confirmed by the immunofixation test that you had.
You will be hard pressed to find sources linking the presence of monoclonal proteins to infections. There are some out there, but MGUS, multiple myeloma, and other non-transient disorders are the most frequently listed cause of monoclonal proteins in the blood. I think it particularly unlikely that an infection is the source of your M-spike given that it is 0.9 g/dL, rather than 0.1, 0.2, or 0.3 g/dL.
It's also true that an M-spike of, say, 1.0 g/dl can mean very different things in different people. In one person, that sort of M-spike could be the sign of disease that's very benign. In another person, the same M-spike could reflect disease that is already eating away at the person's bones and doing damage to their kidneys.
Finally, estimates of how frequently MGUS occurs in people of different ages are not based on anecdotal reports from doctors and patients. The most commonly reported statistics are based on a survey of ALL residents over the age of 50 in one particular county in Minnesota:
Kyle, RA, et al, "Prevalence of Monoclonal Gammopathy of Undetermined Significance," The New England Journal of Medicine, March, 20016 (full text of article)
True, the study doesn't cover 20-, 30-, and 40-year-olds. But results based on the study's sample of over 20,000 people show a clear decline in the likelihood of MGUS when you go from older ages to younger ages (see Figure 1 in the article I just mentioned).
An M-spike of almost 1 g/dL in someone of any age is something that needs to be investigated. It probably won't turn out to be something that requires treatment. But it almost certainly won't go away by itself, and it could be the sign of something serious.
Good luck, and please let us know what you find out as you investigate this further.
You've already gotten a lot of useful advice. I just want to add that, although I'm by no means an expert, it is very unlikely that an M-spike that measures 0.9 g/dL (9 g/l) is due to an infection. As a result, it's very unlikely that the M-spike will go away on its own.
As Multibilly pointed out, when infections increase protein levels in your blood, the increase is usually "polyclonal". This means the increase appears across a broad range of protein types on the SPEP graph, rather than as one or two clear "spikes" in the graph.
When there's a spike in the SPEP graph, it's a sign the increased protein is due to the presence of "monoclonal" proteins. In your case, the presence of monoclonal proteins is confirmed by the immunofixation test that you had.
You will be hard pressed to find sources linking the presence of monoclonal proteins to infections. There are some out there, but MGUS, multiple myeloma, and other non-transient disorders are the most frequently listed cause of monoclonal proteins in the blood. I think it particularly unlikely that an infection is the source of your M-spike given that it is 0.9 g/dL, rather than 0.1, 0.2, or 0.3 g/dL.
It's also true that an M-spike of, say, 1.0 g/dl can mean very different things in different people. In one person, that sort of M-spike could be the sign of disease that's very benign. In another person, the same M-spike could reflect disease that is already eating away at the person's bones and doing damage to their kidneys.
Finally, estimates of how frequently MGUS occurs in people of different ages are not based on anecdotal reports from doctors and patients. The most commonly reported statistics are based on a survey of ALL residents over the age of 50 in one particular county in Minnesota:
Kyle, RA, et al, "Prevalence of Monoclonal Gammopathy of Undetermined Significance," The New England Journal of Medicine, March, 20016 (full text of article)
True, the study doesn't cover 20-, 30-, and 40-year-olds. But results based on the study's sample of over 20,000 people show a clear decline in the likelihood of MGUS when you go from older ages to younger ages (see Figure 1 in the article I just mentioned).
An M-spike of almost 1 g/dL in someone of any age is something that needs to be investigated. It probably won't turn out to be something that requires treatment. But it almost certainly won't go away by itself, and it could be the sign of something serious.
Good luck, and please let us know what you find out as you investigate this further.
Re: Too young for MGUS
Hi tmallory10,
I'm 42, not quite as young as you. I am aware that certain infections and disorders can cause an M-spike as I am going through this right now.
Your specialist is trying to act in your best interests. No one wants a definitive cancer diagnosis or in the case of myeloma being diagnosed with MGUS.
They finally discovered I had bacterial endocarditis due to Bartonella in September this year. The M-spike was found back in April-ish. The spike at the time was 3 g/l (0.3 g/dl) with an bloated IgG of 30.3. Months of various testing, multiple blood tests, scans, x-rays, mibi, 2 bone marrows.
It didn't look good for a while, I won't detail the stats, but my CRP and ESR were elevated. Albumin levels were mildly low. Liver functions were elevated. My anemia levels kept dropping, until one day I felt a "little off" and went on antibiotics and the anemia resolved. Something that does not happen with myeloma.
My heart went knock-knock and then things changed. My specialist told me that the M-spike may disappear as it does appear in acute and chronic bacteria infections like Bartonella. My own research shows it's something to do with Bartonella playing with a number of proinflammatory cytokines, the most important one being IL-6. IL-6 plays a major role as a growth factor form myeloma and plasma cells.
I find out more next month where I stand with the M-spike, however it could take months for it to disappear. An added problem for me is Bartonella isn't an easy disease to treat and to 'cure'. So it could be an extended wait.
My information came from a number of articles but the most important one was titled
Krause, R, et al, "Monoclonal and bicolonal gammopathy in two patients infected with Bartonella henselae." Annals of Hematology, July 2003 (abstract)
I do hope the best for you,
Jason.
I'm 42, not quite as young as you. I am aware that certain infections and disorders can cause an M-spike as I am going through this right now.
Your specialist is trying to act in your best interests. No one wants a definitive cancer diagnosis or in the case of myeloma being diagnosed with MGUS.
They finally discovered I had bacterial endocarditis due to Bartonella in September this year. The M-spike was found back in April-ish. The spike at the time was 3 g/l (0.3 g/dl) with an bloated IgG of 30.3. Months of various testing, multiple blood tests, scans, x-rays, mibi, 2 bone marrows.
It didn't look good for a while, I won't detail the stats, but my CRP and ESR were elevated. Albumin levels were mildly low. Liver functions were elevated. My anemia levels kept dropping, until one day I felt a "little off" and went on antibiotics and the anemia resolved. Something that does not happen with myeloma.
My heart went knock-knock and then things changed. My specialist told me that the M-spike may disappear as it does appear in acute and chronic bacteria infections like Bartonella. My own research shows it's something to do with Bartonella playing with a number of proinflammatory cytokines, the most important one being IL-6. IL-6 plays a major role as a growth factor form myeloma and plasma cells.
I find out more next month where I stand with the M-spike, however it could take months for it to disappear. An added problem for me is Bartonella isn't an easy disease to treat and to 'cure'. So it could be an extended wait.
My information came from a number of articles but the most important one was titled
Krause, R, et al, "Monoclonal and bicolonal gammopathy in two patients infected with Bartonella henselae." Annals of Hematology, July 2003 (abstract)
I do hope the best for you,
Jason.
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JasonJB - Name: Jayzen
Re: Too young for MGUS
Jason,
Thank you very much for sharing your experience and the results of the research you've done.
You are absolutely correct that there are some published articles that report cases of patients having temporary M-spikes due to infections. But this appears to be so rare that articles that review possible causes of the presence of a monoclonal protein rarely mention infections as a factor that should be considered.
More importantly, my impression from reviewing these articles, and from what people have reported here in the forum, is that these temporary cases of having a monoclonal protein involve very low M-spikes – 1, 2, or 3 g/l (0.1, 0.2, or 0.3 g/dl). Just as an example, in one case report of a patient with Bartonella who had a transient monoclonal protein, the patient's SPEP reported that the M-spike was "too small to be measured."
Sève, P, et al, "Transient Monoclonal Gammopathy in a Patient With Bartonella quintana Endocarditis", American Journal of Hematology, 2006 (abstract with link to full text of article)
There also have been disputes about whether some infections truly do cause transient M-spikes. There was an article in Blood in the early 2000s that suggested infections caused by H. pylori frequently causes the transient presence of monoclonal protein. Researchers from the Mayo Clinic, however, disputed this finding:
Rajkumar, SV, "Helicobacter pylori infection and monoclonal gammopathy of undetermined significance," British Journal of Haematology, (abstract with link to full text of article)
I think it important to highlight in particular one thing that you mention. You note that some infections may cause both a temporary M-spike and anaemia. This means that you have to be cautious about assuming that someone has multiple myeloma if they have signs of an infection, a low M-spike, and anaemia. In such cases, the anaemia may be due to the infection rather than myeloma.
Cheers!
Thank you very much for sharing your experience and the results of the research you've done.
You are absolutely correct that there are some published articles that report cases of patients having temporary M-spikes due to infections. But this appears to be so rare that articles that review possible causes of the presence of a monoclonal protein rarely mention infections as a factor that should be considered.
More importantly, my impression from reviewing these articles, and from what people have reported here in the forum, is that these temporary cases of having a monoclonal protein involve very low M-spikes – 1, 2, or 3 g/l (0.1, 0.2, or 0.3 g/dl). Just as an example, in one case report of a patient with Bartonella who had a transient monoclonal protein, the patient's SPEP reported that the M-spike was "too small to be measured."
Sève, P, et al, "Transient Monoclonal Gammopathy in a Patient With Bartonella quintana Endocarditis", American Journal of Hematology, 2006 (abstract with link to full text of article)
There also have been disputes about whether some infections truly do cause transient M-spikes. There was an article in Blood in the early 2000s that suggested infections caused by H. pylori frequently causes the transient presence of monoclonal protein. Researchers from the Mayo Clinic, however, disputed this finding:
Rajkumar, SV, "Helicobacter pylori infection and monoclonal gammopathy of undetermined significance," British Journal of Haematology, (abstract with link to full text of article)
I think it important to highlight in particular one thing that you mention. You note that some infections may cause both a temporary M-spike and anaemia. This means that you have to be cautious about assuming that someone has multiple myeloma if they have signs of an infection, a low M-spike, and anaemia. In such cases, the anaemia may be due to the infection rather than myeloma.
Cheers!
Re: Too young for MGUS
I wondered if Jason had the latest results from his bloodwork. as this week my blood work came back positive for an active Bartonella infection. I also happen to have MGUS, Was diagnosed this fall with an M-spike too small to quantify and slightly elevated kappa light chains.
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countrygirl - Name: Countrygirl
- Who do you know with myeloma?: IgG MGUS
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 35
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