|MGUS: Questions About Symptoms, Related Diseases|
Little 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.
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?
Q. What other diseases are associated with MGUS?
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Q. Is IgG lambda monoclonal gammopathy the same thing as MGUS?
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?
Q. Is there a link between MGUS and peripheral neuropathy (nerve damage of the hands and feet)?
Each of these syndromes combines several symptoms and signs. For example, POEMS syndrome refers to:
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?
>> Q. Is there a treatment for the neuropathy?
Q. Readers have also asked about aching joints, aching muscles and dizziness. Are these common symptoms of MGUS?
Q. Are there any other common symptoms?
>> Q. Can you do anything to help decrease your odds of getting the syndromes?
>> Q. Are there any clues for who might develop a syndrome?
Q. Are there symptoms people with MGUS should watch for and notify their doctor about?
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?
Last updated and/or approved: October 2011. This general health-care information is not meant as individual advice. Please see our disclaimer.
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.
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
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
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.
Mgus found at 27 yrs
written by Courtney , August 15, 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!
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.
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!
written by Rob Wright , February 27, 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.
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.
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!