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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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MGUS and Anti-MAG neuropathy
written by Cathy Hanlon , August 20, 2015

I am a 60-year-old female and was diagnosed with both Anti-MAG and MGUS 5 years ago, after I saw a neurologist for numbness that started in my big toe. Since then it has progressed to both feet and hands and somewhat up my extremities but is not terribly bothersome. I get my immunoglobin levels checked by my hematologist every 6 months. Had a full-body CT scan and bone marrow aspiration done upon diagnosis, and they came back OK--no signs of a blood cancer yet. My IgM is high (926) and is slowly climbing every 6 months, although has remained the same on my last check. I blame my condition on pesticide exposure as a child, as I grew up on a farm that was heavily and often sprayed for insects. I am at a "wait-and-see" stage, and although I like my hematologist here (I live in Central NY state), was wondering if there were any expert physicians that anyone knows of in the Boston and/or NYC area...or Philly or perhaps even the Cleveland Clinic. Also, has anyone ever taken frankincense oil? It's supposed to have anti-cancer fighting agents, etc... I know there are no drugs, etc... to prevent what is going to happen from happening, but I am hoping that perhaps a lifestyle change and diet would make a difference. I am of a good weight and exercise regularly and I think otherwise is good shape for my age. Thanks.
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MGUS is simmering
written by Lou G , August 15, 2015

I was diagnosed with MGUS in 2011, after a blood test showed the M protein was high, so my oncologist did a bone marrow biopsy. He said I had simmering multiple myeloma, meaning it was just there in the bone marrow, but not moving anywhere else in my body. I've had blood tests every 3 months since. A year later, another bone marrow biopsy showed I also had leukemia, but as with multiple myeloma, was simmering. A year later showed the same. So since, the M protein factor hasn't increased so my doctor hasn't done another biopsy. Because I have psioriatic arthritis and take Humira for it, I require regular blood tests. My rheumatologist and dermatologist want them to ensure the Humira isn't affecting my body. I'm fortunate as the arthritis and psoriasis are in remission. Had I not been required to have these blood tests, perhaps someday, the MGUS would have begin spreading and I'd then require chemotherapy or other treatments. In 2010, my wife, after having an artery surgery, due to her complaining about her feet hurt because of bunions, turned out to be circulation problems. During the surgery, an aortic aneurysm was found in her stomach. Had she not had the surgery, perhaps the aneurysm would have not been found, and had it burst, she would have probably died instantly. On a followup MRI, cancer was found. As she was a forever smoker, it was stage 4 lung cancer so her prognosis was 3 years with chemotherapy and radiation as needed. The same oncologist saw both of us, so we were very confident in his diagnosis and treatments. Unfortunately, my wife didn't quite make 3 years. Had she quit smoking as many doctors advised, and went to doctors more often for regular checkups, she might still be alive today. My point in this long article is to point out the difference in folks getting regular visits with primary care physicians, and blood tests, or whatever. I realize that someday the MGUS might spread, and once it does, I'll receive treatment to extend my life and relieve pain, but there is no cure. If I'm fortunate to live as long as my father, he will be 100 in December, more medications and treatments that can eradicate MGUS might be found. In the meantime, I will continue whatever regime my doctors prescribe. I suggest to anyone reading this, they take it to heart and do the same.
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MGUS since 2007
written by Tina , August 14, 2015

I was diagnosed 8 years ago and I run high in my IgG (they fluctuate from the 1700 mark to lower 2000 mark). I am trying to get a referral to see a new RA specialist; some of the RA specialist could be a good alternative for a medical opinion to rule out if the MGUS is linked to autoimmune or other. I had one hematologist tell me they feel my MGUS is somehow related to autoimmune. yes, I get a lot of symptoms but unsure from what. They affect me from cardio, endocrine, gastro, visual some neurological and RA in my body. Than there are times I feel like I've never had an ailment. Best to all.
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Frankinscense?
written by Doreen Bourdeau , August 01, 2015


I and my sister have MGUS. I was diagnosed 10 yrs ago and have had 2 series of Retuxum over that time span. My sister, newly diagnosed has MGUS but it progressed to Waldstromes. She is being treated with steoids and Velcade. her numbers have come down enough to begin Retuxum. Question: it has been suggested that she try Frankincense oil (with a carrier base) - her doctor is going along with this. FRANKINSCENSE IS SUPPOSED TO KILL CANCER CELLS! Who knew? Is this anywhere near being true? Could it be helpful in any way? Please advise.

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...
written by Linda Levey , August 01, 2015

HCG diet - any link to multiple myeloma?
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HCG
written by Linda Levey , August 01, 2015

HCG diet - any link to multiple myeloma and lymphoma? Please help me to sort out my health issues.
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Clarifications of perceived contradiction please.
written by Lindsay , July 26, 2015

These 2 Q & As seem to contradict each other. Can you clarify plwasr? Thank you

Q.Readers have also asked about . . . dizziness. Are these common symptoms of MGUS? A. These would be very unusual symptoms, unlikely to be related to MGUS

Q.Are there symptoms people with MGUS should watch for A. Yes . . . dizziness, fainting . . .

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...
written by Roberta , June 22, 2015

My father died in 1999 of amyloidosis with damage mainly to his heart. In 2012, my mother died of kidney failure as a result of multiple myeloma (after almost 4 years of dialysis).

Do you think it is coincidence that my parents died of these related diseases or might environmental factors have come into play? I wonder specifically about radon.


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Thank you for your comments
written by Alie Winokur , April 21, 2015

I have MGUS. I was diagnosed a few months ago but probably have had it for quite awhile. I have 10 semi-numb toes which scare me, but there's no pain. I've also had intense itching with hives and sores, probably from scratching, for almost 3 years. Nothing but ice helps the itching. I have 2 relatives that died from MM; my grandmother and my uncle; both on my maternal side. So, I guess the risks are greater for me. I'm 68 years old; look and feel young. I have extremely low immunity (virtually no b and t cells); however, I don't ever get sick. And usually have lots of energy. The doctors don't understand why. I'm so scared that I can hardly stop thinking about it. Tomorrow is a new doctor's appt at NYU in the city. Hopefully he'll say something encouraging or at least tell me something that I can do. Thank you again for your comments. Good luck to everyone. I understand the fear. Alie
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MGUS
written by DAB , April 15, 2015


I was diagnosed about 8 plus years ago. Received infusion therapy with Retuxum. About 5 years later I received another infusion therapy of Retuxum. I find that now I tire easily and my hip/ knees/ back hurt - maybe arthritis. The hematologist says the issues are mechanical ( I did injure myself a few years ago). However, I have had a bad back since my 20's - I am now 64. My older sister was just diagnosed with an igg deficiency when she had pneumonia and was not recovering. When she was treated, the pneumonia meds began to work. Now the immune specialist says she has MGUS like me! She too has problems with her hip, etc. She is still undergoing tests to see if she has cancer. Is mine "smoldering?" I see my hematologist next month. I am going to ask him to test my igg levels because I am so very tired all the time. I can't multitask anymore and even when I do a little housework, etc., I need to sit down and rest. I just read that igg deficiency and igm protein deficiencies are related so that is why I need to find out whether or not the igg protein is too low -it causes people to be tired and not recover well when sick. has anyone had this as an issue? Also, Mayo clinic online said that there is a genetic component to MGUS. Interesting as I suspect my father had it and now my sister has it.

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