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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.


You May Also Be Interested In:


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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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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Ginny
written by Ginny , January 02, 2015

I too was just diagnosed MGUS. It was found by blood tests. I feel it has something to do with the BP they put me on in May of 2014. Have had lots of tests and now waiting to get the results of those at this next appointment. Had several blood tests earlier in the year and everything was fine so I feel meds had something with bringing this on. What I have read so far makes me believe not much is know about MGUS?

Was really frightened at first but now just trying to get answers.

Looking for answers.

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another MGUS with issues
written by G Martin , December 10, 2014

I was diagnosed by accident. Was on Benicia for moderate BP (140/8smilies/cool.gif for a year. Towards the end of the year, I started having hives, feeling fatigued, and having night sweats. My family doc pulled me off the Benicia, then ran liver enzyme tests before starting a new BP med. The liver enzymes came back high. They then checked my liver and called asking, how much do you drink? I have never drank any alcohol in 55 years. Then was referred to an hematologist oncologist who ran over 90 tests. I am IGM mgus, now with peripheral neuropathy, reynauds, fatigue, and at times bad pain on my feet. No, I am not diabetic. They have tried Lyrica, Neurontin for the neuropathy, yet no relief. I also now have three different types of eczema. No symptoms, huh?
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Message for simon nandlal
written by Rob Wright , November 17, 2014

I undrstand your anguish as this was on my patg too. I can only emphasise the need to eat the freshest garden organic vegetables and those herbs and red berries which will assist your bodies natural defences. I also took fish oil (8 capsules a day) and a leaf of comfrey daily which is high in B12. I was advised to lower my carbs and increase protein in my diet too. A typical day started with a green smoothie with greens from the garden, spiralena, whey powder which to start with tasted awful! Always had a food guide around to check alkalinity of foods and stayed well clear of acids particularly foods that ended in "ose"like glucose, lactose etc. also kagaroo was always on my menu these animals i love. Clean water I read so much in the esrly days among which there was a lot of scary negative stuff. I adopted an internet search which had the word cured incorporated. This helped me achive a posive attitude. There are many other things which assisted among them were my wife, my naturapath, exercise in clean environment, my change of location, etc. Recent full blood studies only showed cholesterol all other things to be normal. Discussion with doctors gave me a clear bill of health. Take the bull by the horns and approach holistically assist your body to heal itself.
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Message for Rob Wright
written by simon nandlal , November 14, 2014

Hi Rob
I am a 43 year old male from the uk and was diagnosed two months ago with igm mgus (lowish measurement). I have private medical cover so have received good care but am very scared as I have a young family. Would like to share protocols and understand what diet, vitamins and supplements you're taking (I've got various aches and muscle twinges and am trying curcurmin and other vitamins in an attempt to reduce symptoms).

Hope you get this message.

With thanks
Simon

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thanks
written by mark , August 16, 2014

thanks everyone
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...
written by nancy erickson , June 07, 2014

I have recently been diagnosed with Mgus,IgG light chain score is 4.0 I have neuropathy and received a lab report saying I had a m-spike of 1.0. I had non-hodgkins lymphoma in Dec. 2003....had chop
plus rituxan, 8 treatments three weeks apart after the healing from an emergency surgery in the lower abdomen. Now I will wait for 4 months and have blood work again. Is this soon enough for follow up with my scores?

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So many questions
written by Cherie , April 15, 2014

I was diagnosed with MGUS by accident as many of you were. I was in a lot of pain and thought I had arthritis.
My M portein count is a fraction compared to everyone else. In 2013 it was .3 and in 2014 it was .4. How high is high anyway?

I suffer from joint and muscle pain.

It doesn't look like I have the pain because of MGUS, It was just found that I have it because of the tests I had because of the pain.

I am just frustrated that I'm in so much pain - it's exhausting.

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...
written by joanna , February 13, 2014

I am 31 I just found out that I mgus I'm 31 I agree I have severe pain in my joints the doctor acts like its no big deal idk my level I know we go back in September for a bone scan and a bone marrow because I'm pregnant currently I think mgus does cause chronic pain

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Diet and mindfulness
written by Rob Wright , February 01, 2014

Seems we all get a panic attack when Dr calls to say he/she wants to see you. Then the real stress begins when MGUS is diagnosed. Stress must be avoided! Says my GP while writing a mass of referrals. My advice after 18 months of MGUS is to build your bodies defences by developing positive mental attitude (not an easy feat), ask questions about your blood studies. My blood was Iron and B12 deficient. Make adjustments to your diet. In my case I completely stopped all sugars in my diet ate foods such as iron rich broccoli, and foods rich in B12. A high protein diet was next for me, luckily here in Australia we are able to eat roo which is low in fats and very high in Iron. I talked to some doctors in Sydney who were doing a study using curcumin and found some encouraging results with respect to MGUS, so I also take curcumin 2 a day.
I now have very few pains but periferal neuropathy is still present in my 3 middle toes both feet. I no longer worry about the onset of myeloma or a heart attack! Blood tests show no increase in protein levels and deficiencies are decreasing.
Learn as much as you can about this invader of your body. Learn about your body.
I'm not saying I don't have the occasional panic attack when experiencing inexplicable pains but I bring my self to reality with meditation and exercise (Marshal arts). Accept what you have, work positively to increase your longevity and most important enjoy every moment. This is better than living in fear of the worst outcome

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MGUS - There's more than meets the eye...
written by Alesia , January 31, 2014

I find it quite interesting that the common thread among most of us diagnosed with MGUS is unexplained muscle, joint and bone pain, since there aren't supposed to be any symptoms! I agree that doctors have no clue what they are talking about regarding this condition and really need to say that they don't understand it as opposed to blowing it off.

I was told that the likelihood of me developing cancer or any other condition as a result of having MGUS was so slim that it wasn't worth being discussed - this was a year ago.

For the past month, I've been noticing bruising on my body (I'm an African-American with dark skin - well, my skin is getting lighter in some places, which I think is cause to worry)so will be scheduling an appointment with the cancer specialist soon.

But I can say that for whatever reason, I haven't experienced any muscle or joint/bone pain for 4 months and cannot tell you what changed. I guess all we can do is keep a good journal of what we are experiencing and hope that it really is nothing to worry about - but I doubt it.


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Mgus found at 27 yrs
written by Courtney , August 16, 2013

Even though Mgus is supposedly not something to cause any symptoms I find it very odd that this ugly scare has been found in most of us because we were dealing with chronic pain symptoms to begin with. Our chronic pain led to blood testing in which Mgus is found. How can they STILL claim that this blood abnormality doesnt cause any symptoms? Almost all of us experience chronic pain and/or nerve tingling in some way. I've sadly realized that doctors just do not know enough about this. Its sad and its scary. For those of you in your 50s-60's its much more common as the textbooks say and I dont feel you should worry much at all. Just get your blood work done 2-3 times a year and make sure you follow up with your oncologist in case they forget to contact you.

At 27 and now 37 I do worry. I was told at 1st that there must have been a mistake with my blood tests because it hasnt been found in patients my age. They tested again and same result. I had just had my 1st and only child when diagnosed with this and felt my world was coming to an end. It doesnt make any sense and its scary when doctors cant explain anything either.

A medication that HAS helped me with my chronic pain the past 10 years is called Tramadol/ Ultram. Same drug although one of those is the generic. This drug is NOT a narcotic although it is controlled. It has REALLY helped me because I dont feel drugged like one may feel with a narcotic. It doesnt make you tired and it somehow helps block the pain signal to the brain. For those of you suffering with chronic pain like I do somehow related to this ugly blood abnormality Mgus...I really recommend trying Tramadol / Ultram. Its been my blessing through this!

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treatment of symtoms
written by Thomas , June 28, 2013

There is a problem in medicine presently that many. doctors are just treating symtoms that they know how to treat. I had a facial neuropathy two and a half years ago. My doctor freind did not direct me to check it out but seemed to minimize the symptom. I have since developed several other neuropathic issues with my feet the scalp, lips, tounge and hands. I now have heart failure as well but no chest pain, and nothing found in the xray or any of the imaging that has been done. I went to the neurologist and she found the m spike. Thismay explain both the neuropathy and the heart failure. I only hope that the delay of two and a half years did not cause too much damage.
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MGUS
written by Gillian , April 23, 2013

I was diagnosed with MGUS following a routine blood test 10 years ago. My doctor followed up with a bone marrow biopsy and full body scans. I still have no symptoms and have a blood test every 3 months to monitor any progression. I wish I had never had the initial test, as my husband still worries every time I have the smallest ache or pain. I am fit and well at 57 and work full time. I am perhaps one of the lucky ones, but as I have about a 1 in 5 chance of this progressing, I don't worry too much, though am alert to any changes in my body. I hope that more research can be done into this condition as obviously we don't know why most people with MGUS stay healthy, but too many do not. Thank goodness for the Australian medical system - top quality care and no additional costs!
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MGUS
written by Rob Wright , February 28, 2013

Ruth, Just over 12 months ago I too went through all the tests to establish that I did not have myloma but in fact Mgus. After much research (and stress!) I happened upon a paper "The potential role of curcumin (diferuloylmethane) in plasma cell dyscrasias/ paraproteinemia" by 2 doctors in Sydney, Mssrs Terry Golombick Terry Diamond of Department of Endocrinology, St George Hospital, Kogarah, Australia. These people conducted a single blind randomized controlled pilot study on 25 patients with paraproteinemia. I discussed the results with these doctors, and myown GP of course, and felt i had nothing to lose.So I sourced the curcumin from the US and have been taking them ever since. The pains I was experiencing subsided and I no longer need to take another "blocker' to stop reflux I had been taking for 15 years.
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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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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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