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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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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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Mgus and fear
written by Rob Wright , March 29, 2015

Please read all my comments as I too had major stress when first diagnosed. I've always been a positive person and in those early days found myself reading all the worst outcomes associated with Mgus. Even haemotologist and visits to him at the cancer ward were stressful as I looked around the people in the waiting area! So I changed my studies to the positive side and the "cured", took stock of my diet and drastically changed everything that was a contributing factor in my Mgus. I do have some slight left over side effects that may have been a result of a fall from a ladder and the resulting haemotoma,loss of feeling in my left knee directly below the bruise. I still have some neuropathy in both feet in my middle toes. Look most critically and analyse your diet, your exercise regime and most importantly control your stress, perhaps with meditation. You must snap out of the negative thought process as this contributes. This too was hard for me. Good luck, Dorothy
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doctor's comment on mgus
written by Dorothy Moore , March 28, 2015

Five yrs ago started being unsteady on feet with burning on soles of feet.trapped nerve.your pain in hips is artheritus,the loss of balance,your ears.your newly diagnosis of mgus has nothing to do with that.Reading yr info.suggest he is wrong and has everything to do with it.im having mri scan easter sat.so may get answers.its the o verwhelming tiredness I can't cope with.Could these symptoms with mgus mean im in the nxt stage to myaloma.please help,im going mad with worry.
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Tired of watching and waiting
written by Ursula Andrews , March 18, 2015

I was first diagnosed with MGUS in 12-03, whiile suffering from a severe gi disease. I have been seeing a hematologist since then, just "watching and waiting.". I have had 6 DVTs and am warfarin therapy, dizziness, chronic hematuria and broken bones, blah blah blah. I am tired of being evaluated every 6 months. I am told my MGUS is "stable." Lambda spike varies from 0.4 to 1.7; plasmacytosis 7%..
Should I just quit wasting time and money on going to doctors? "Watching and waiting" seems like a waste of time.

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