|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.
another MGUS with issues
written by G Martin , December 10, 2014
I was diagnosed by accident. Was on Benicia for moderate BP (140/8 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?
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.
Message for Rob Wright
written by simon nandlal , November 14, 2014
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.
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?
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 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!