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MGUS: Questions About Symptoms, Related Diseases

mgus-questions-doctorLittle did we know when we published an article on a blood disorder called MGUS that it would end up so popular. Turns out, a lot of you guys have questions about symptoms and associated diseases—and you've been posting them.

We wanted to get answers to your questions, so we put together a follow-up article. We asked two top MGUS experts for their insights. This is the result.

This article will make the most sense to people who have MGUS or know someone with it. For a basic introduction to the disorder, please see our original MGUS article.


Part 1
Diseases Related to MGUS

An email interview with S. Vincent Rajkumar, a hematologist-oncologist, researcher and professor of medicine at Mayo Clinic in Rochester, Minn., who specializes in myeloma and related disorders.

Q. Two diseases associated with MGUS are multiple myeloma (a cancer) and amyloidosis (in which proteins build up in your organs and tissue). If you have MGUS, what are the odds you'll get one of those?
A. One percent per year.

Q. What other diseases are associated with MGUS?
A. Most associations are likely just coincidental and not actually related. In some patients, MGUS may be related to conditions such as peripheral neuropathy, osteoporosis, certain skin disorders, certain kidney disorders, etc. But whenever a patient has one of the disorders and an MGUS, it does not automatically mean that MGUS caused that condition. Most of the time it did not. After all, 3 to 4 percent of the normal population over age 50 has an MGUS.

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Q. Is IgG lambda monoclonal gammopathy the same thing as MGUS?
A. MGUS can be of many types. IgG lambda is one of them.

Monoclonal gammopathy is a nonspecific term. They should say MGUS or myeloma or something specific. If someone is told they have monoclonal gammopathy, they probably mean MGUS, but you can't be sure; the patient should find out if it is MGUS or myeloma or smoldering myeloma, etc.—more specific since all of those could technically be called a monoclonal gammopathy.

Q. Is there a link between MGUS and stress?
A.
No.



Part 2
Symptoms And MGUS

An email interview with Hani Hassoun, a board-certified hematologist-oncologist researcher and doctor with Memorial Sloan-Kettering Cancer Center in New York City. His specialties include multiple myeloma.

Q. Is there a link between MGUS and peripheral neuropathy (nerve damage of the hands and feet)?
A. Yes. There are several syndromes that link monoclonal gammopathy to peripheral neuropathy, including POEMS syndrome, amyloidosis, monoclonal gammopathy-associated peripheral neuropathy and more. The mechanism is not always clearly understood.

Each of these syndromes combines several symptoms and signs. For example, POEMS syndrome refers to:

  • Peripheral neuropathy
  • Organomegaly (enlarged glands and some organs)
  • Endocrine abnormalities like thyroid problems, etc.
  • Monoclonal gammopathy
  • Skin changes

However, the diagnosis is no longer MGUS if these entities are present. The term MGUS refers usually to the presence of a monoclonal gammopathy that does not cause any deleterious effect.

>> Q. How bad does the neuropathy get?
      A.
The neuropathy is very variable, and there is a very wide spectrum of severity, from minor to debilitating.

>> Q. Is there a treatment for the neuropathy?
      A. Depending on the syndrome that is concerned (POEMS, amyloidosis, etc.), there are various treatments that can be effective.

Q. Readers have also asked about aching joints, aching muscles and dizziness. Are these common symptoms of MGUS?
A. These would be very unusual symptoms, unlikely to be related to MGUS or to monoclonal gammopathy in general.

Q. Are there any other common symptoms?
A. Usually, unless the patient is diagnosed with one of the syndromes mentioned above, MGUS should not cause symptoms.

>> Q. Can you do anything to help decrease your odds of getting the syndromes?
      A. Not that we know.

>> Q. Are there any clues for who might develop a syndrome?
      A. Some types of monoclonal gammopathy are more likely to be associated with specific syndromes.

Q. Are there symptoms people with MGUS should watch for and notify their doctor about?
A. Yes.

  • Muscle weakness
  • Sensory problems
  • Dizziness, fainting
  • Heart problems like shortness of breath
  • Abdominal symptoms like diarrhea or constipation
  • Skin changes like easy bruising
  • Discolorations of the extremities

But in general, a good review of symptoms and a good examination by your physician and regular checkups should be adequate to screen for these problems. Patients with MGUS should be followed on a regular basis by their physicians and have blood tests every three to six months.

>> Q. Do those symptoms mean you might have one of the syndromes, or do they mean you might have something more serious, such as multiple myeloma?
      A. Both. Most of the monoclonal gammopathies as mentioned above are harmless, and this is why they are called MGUS. [The "US" refers to "undetermined significance."] However, a minority can be harmful and cause the syndromes mentioned above, in which case the patient does not have MGUS but one of the syndromes. In addition, the benign entity MGUS may transform into something more aggressive like multiple myeloma.


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Last updated and/or approved: October 2011.
This general health-care information is not meant as individual advice. Please see our disclaimer.
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0
IGM Lambda MGUS
written by Ruth , February 27, 2013

I was diagnosed with IGM MGUS at the Mayo Clinic after 7 years of going to my family doctor and many specialist to diagnose the pain in my right rib cage area. It got so bad I could not ride in a car, sleep, sit in a chair, exercise or walk. I became very depressed due to the constant pain which no meds would help allievate. The Mayo Clinic ran all kinds of test and found my MGUS during routine blood test. My white/red blood counts were low along with my platetes. They did bone biopsy and found 1% abnormal cells. My family doctor says it is no big deal and just laughs at it. I think I will change doctors soon. I think there is still a lot to be learned about this condition. I found out after getting my records from my family doctor that my blood count has been low since 2007 and the doctor never mentioned it to me as he thought it is minor low and no big deal.
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0
Mgus
written by Ginger , February 05, 2013

Recently diagnosed with Mgus. Had optic neuritis
Six months ago and don't know how long I've had this sleeping
Monster. Dealing with rib and joint pain and waiting to go to Mayo
For help hoping to find some answers there.
There needs to be way more information on this far from benign disorder!

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MGUS with sarcoid
written by Kas , January 12, 2013

I have had a diagnosis of multi system sarcoid for the last 10 years, diagnosed my splencetomy

Have now been found to have a M protein count of one.

I have renal dysfunction and Anemia of Chronic Disease due to my sarcoid, but am otherwise well. The MGUS finding was only because I complained of numb fingers at night.

Could an inflammatory disease such as sarcoid have lead to MGUS, and could the protein count ever normalise>

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ARTHUR
written by ARTHUR DUNNETT , September 17, 2012

HI,i have been diagnosed with MGUS.All necessary tests and biopsy of bone marrow have been done,blood tests , bone/skeletal,sonar etc,but no sign of myeloma detected or present,or other cancerous conditions found.But,no-one seems to be able to diagnose the severe body pains i am experiencing on a daily bases and have to bear, as, no form of pain pill seems to illeviate or lessen the pain.It is also quite apparent that no-one knows the cause or where the pain is coming from, thus, what medication do i need besides the calcium for mild osteopenea ?given these circumstances,what,where else should one look to find possible answers.
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mgus
written by ARTHUR DUNNETT , September 17, 2012

hi,i would like to know what is really behind/causing the pains i currently experience daily which in effect intensifies at night and has now led to me suffering from insomnia ,besides mgus which i believe has no known symptoms ,all necessary tests and biopsy of bone marrow having been conducted and all resulting in a negative answer to myeloma and no presence of any form of cancer found ,no-one appears to be able to diagnose where or what the causes of the pains i have,i cannot sit,stand,lay-down for long periods of time without severe pains,neither carry,pick-up heavy articles for long periods without pain.i also have osteopenia,but this too does not have any effect on the bodily pains i have which insidently have no fixed pattern of severity or directed to any specific part of the body,but are random in both severity and are at times all over the body.any suggestions or possible answers will be appreciated.thank you.arthur
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My problem
written by Hazel , August 27, 2012

Hi I am a 40yrs lady with MGUS .I get short of breath. I have met MDPhysicians, but they do not understand. Whom do i show now? Plz help me. I too hav more queries.....Hazy
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Protein found in blood-low iron
written by Joan , January 10, 2012

I wasn't diagnosed as being MGUS, but was told that my protein in my blood count was at .05 but that when it progressed to 1.5 they would want to do a bone marrow biopsy. I did an entire body bone scan and no symptoms were seen. I was told that MM is a long term probability, but due to the fact that I am already 70, my hemotological Oncologist says that "something else" will probably "get me" before MM can fully manifest...then added that MM was not curable but manageable with chemo.

Is this correct???

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Re: MGUS
written by Leigh Ann , January 06, 2012

Hi, Rob. As we understand it, there's an increased risk, not an actual progression. You may find this article on multiple myeloma helpful:

http://familydoctormag.com/chronic-disease/1562-multiple-myeloma-cancer-and-mgus.html

Thank you--and everyone--for your questions. We're unfortunately not able to answer all of them, but we hope these articles give you at least some starting points for discussions with your doctor.

(Just a reminder, again for everyone: Our answers, like our articles, aren't meant as individual advice.)

Very best,

Leigh Ann Otte
Managing Editor
MyFamilyDoctorMag.com

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Mgus
written by Rob Wright , December 28, 2011

I appreciate your answer Lee Anne. More questions, Is there an actual progression to Myeloma or is there just an increased risk of Mgus progressing to malignancy, furthermore do the statistics take into account the increased viscosity of blood in "other causes"
Also is it normal for one's blood iron to be low?
I too am interested in boulet's question re 8.1? Is there a way to control this without chemotherapy i.e. diet and exercise.
Wish I'd listened at school during my Hematology class!

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Re: Mr
written by Leigh Ann , December 18, 2011

Good question, Rob. The one-percent risk of getting multiple myeloma accumulates each year, but with a caveat. Dr. Rajkumar explained this in a 2005 article in the journal "Hematology: American Society of Hematology Education Program Book":

----
The rate of progression to multiple myeloma or related malignancy is 1% per year. Thus, the risk of malignancy for a 50-year-old patient with a 25-year life span is 25%. However, because of the relatively low annual risk of progression, one needs to take into consideration other competing causes of death such as heart disease and unrelated malignancies. In fact, the true life-time probability of progression is substantially lower when these competing causes of death are taken into account, 11.2% at 25 years. The risk of progression with MGUS does not diminish even after 25–35 years, making lifelong follow-up necessary in all persons diagnosed with MGUS.
----

Back to me (Leigh Ann): In other words, some people die of other causes, diminishing the pool of people with MGUS. So, while the risk seems to accumulate at the rate of 1 percent per year, that's partly because there are fewer people to track each year.

The article is here: http://asheducationbook.hemato...1/340.full

Leigh Ann Otte
Managing Editor
MyFamilyDoctorMag.com

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Mr
written by Rob Wright , December 10, 2011

I have been diagnosed to have Mgus. Bone scans, Internal examination, Marrow biopsy and a MRI seem to have ruled out MM.
However my white cell count is down and I lack Iron etc
Is the percentage of those who progress to Multiple Myloma a result of age and death rates on the statistics? I am having trouble in understanding "may progess at a rate of 1% per year".

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Multiple Myeloma Article Published
written by Leigh Ann , November 07, 2011

Hi, everybody. The multiple myeloma article has been published:

http://familydoctormag.com/chronic-disease/1562-multiple-myeloma-cancer-and-mgus.html

We hope it's helpful.

Leigh Ann Otte
Managing Editor
MyFamilyDoctorMag.com

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Re: MGUS
written by Leigh Ann , November 01, 2011

Boulet, good question. Others have asked about the M protein level too. We'll be covering that topic in our article about multiple myeloma, which will be published on Monday.

Leigh Ann Otte
Managing Editor
MyFamilyDoctorMag.com

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MGUS
written by boulet , October 31, 2011

i have had mgus for min 3 years,my m protien blood count i geuse is what its called was 8.1 oct 2011.im told there is only a concern when the count gets to 30 ,blood clots may occure at this level .what count is normal and what count should i be not looking forwarding to.
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