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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
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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Recently diagnosed with MGUS and symptom (+)
written by Karen Burge , March 07, 2015

I am a 52 year old female recently dx with MGUS which was discovered s/p a finding of a protein spike in regular blood work. I have been on blood pressure medications since 2008. I have recently been started on cholestoral medications with poor results as of last blood test. Cholestoral keeps climbing even though I have a life long hx of eating health diet. I do confess, I need to exercise more.
I have recently (in the past year or so) deveoped chronic non descriptive pain, bone pain, muscle pain, debilitating fatigue, dizziness/ vertigo.
I understand that formal reports state MGUS is asymptomatic but I find it quite curious that the symptoms I am experiencing are the same as others with similar medical hx.
I am convinced that these symptoms are absolutely associated with MGUS!
Very glad to have found this site and plan to monitor closely and hope to offer as much information as I might glean!


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Concerns for my mother's MGUS
written by Lisa , March 06, 2015

About a year ago, my mother was diagnosed with MGUS and sees her Dr. Every 3 to 4 months. She has been having diarrhea every day two times for months now. She has joint and muscle pains like many people mentioned. But, I am very concerned for her and was wondering if anyone Else has been experiencing the diarrhea as a result of their MGUS.
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Your sight is helpful and assuring.
written by debra , January 20, 2015

I am awaiting my bone marrow biopsy as well as an mri. My m-protein is .05. I was really very sick over the thought of these life altering findings. I have calmed down a bit. I Thank ALL OF YOU for this community of fine humans who have to put up with this health issue. No matter what the findings...at age 53- I feel more informed. Bone survey was ok however doc felt that a questionable issue with cervical spine was not a worry for her but best to follow up on an mri. I am tired of all this and just want to ignore the mri and the biopsy as .05 seems a no big deal...who knows going to go through it till the results have no choice right.
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To Greg
written by Gillian , January 15, 2015

I think people who have an MGUS diagnosis are experiencing symptoms that are not "something else" - nor are they recognised as part of MGUS (which is asymptomatic, as you noted). The trouble is that their experiences have not been explained by another diagnosis and many people wonder if perhaps the doctors have it wrong. They note a number of similarities with other MGUS patients and are looking for an explanation. People become very anxious when their asymptomatic condition is experienced alongside otherwise unexplained symptoms. I myself have periodic spinal pain that my doctor cannot account for. Is it part of MGUS? Is it a mini-stage, before MGUS progresses? Is it unrelated? No-one can tell me.
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MGUS is asymtomatic
written by Greg B. , January 07, 2015

It appears obvious to me that many people miss the key word in the definition of MGUS:ASYMPTOMATIC! If you have some type of complaint, sign, or symptom, it cannot, by definition, be related to MGUS. Once MGUS begins to cause symptoms, it ceases, at that point, to any longer be MGUS! It "evolved" into something else, ie:myeloma,amyloidosis, etc. Understand?
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Thank you Rob Wright
written by Debra , January 04, 2015

I have been searching - sweating - suffering and feeling suffocated by worry over a low level of M-Protein found by a routine blood test. I have made a pending appointment with a hematologist / oncologist. I am 53. I appreciate your positive spin on this strange out of the blue health issue. I have been researching every minute wasting my holidays and time with family over an issue that is what it is...regardless is this turns out bad or good...change is looking me in the face. I have to take care of myself. Eating - Drinking - Meditation and Exercising through this stress. If the disease that pending does not kill you the stress of worry
will hit you in the end of it all. I am confident that MGUS is the diagnosis. Meanwhile, I have to stop the madness of dwelling until I know the outcome. Thanks much for your post a year ago...I know with your positive attitude that life finds you WELL!


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To Ginny
written by Rob Wright , January 02, 2015

I understand your anguish but the first thing you must do is change your mindset.Be positive and understand many people live long lives with Mgus. I too blamed the meds as I was on a blocker called Losec for 15 years.I still feel being on a blocker for that long interfered with metabolisation of all the essential elements to maintain a strong natural defense. I was assured by Doctors there were no known side effects. Please read my previous comments. In keeping with suggestions by Doctors I had full blood studies done at least twice a year and in October 2014 I went for all the tests again, full blood study, PSA, etc. Results of the tests were discussed at length with the Doctor who assured me my only concern was cholesterol which he believed to be the cause of high blood pressure.Cured? I don't know but I sure feel much healthier, happier and confident than I did for the past few years.
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