Diagnosed: MGUS

Contact Mayo staff and have them send you a packet of Multiple Myeloma information like they sent me two and one-half years ago. Also google International Myeloma Foundation and request their quarterly magazine.

You have a busy life, and losing your mom is it's own journey.
My husband's diagnosis was at age 62 due to peripheral neuropathy in his feet. He also has degenerative disc disease in hus upper spine & 2 surgeries so far. He thought it was restored that but his primary care doc ordered the blood tests and imaging and got him referred to a heme-onc, just before Covid. Unfortunately, I didn't go to that appointment with him, not sure how it was explained and he's convinced he has cancer, period, even though his numbers remain in range of *just* MGUS.
So much of it is new and "scary" and good patient education is critical, and being receptive to patient education is also key.
Very few progress to more serious disease, and I'm a believer that a good nutritious diet (healthy carbs, proteins, veggies, fruits, less ultra processed foods) can be helpful. Right now we're at blood work every 6 months, and possibly due for imaging as the 5 yr anniversary of diagnosis is next month. The peripheral neuropathy he experiences is a tough one...no recognized treatment specific to paraproteinemia that I've found. Working on addressing the chronic pain-chronic insomnia from his other conditions, to perhaps get him less sedentary. Also slow going as he ages. The more you can do now, while relatively youthful, the better likelihood to live a relatively healthy long life.

@lbhayes
How are you? Did you ever get your questions answered?

@sandramgus
Hi! Just checking in. Did you have your three month checkup yet? Patty

I was just diagnosed with MGUS, low risk, IGG type. Two questions!!!

1) Can the feeling of walking barefoot on bubblewrap be from MGUS? My Hematologist says no and wants me to see a Neurologist. Does anyone else have this sensation? I do not have it with shoes on.
2) If I suspect I got this from a new home built on a cleaned up Army base, should I move, or is it too late? I have questioned the cleanup team and they assure me it was checked thoroughly and our water is clean.

Thank you to anyone who can help!

If you are concerned about your water, you can collect a sample in a clean glass container and send it in for analysis (to who varies by local and you would likely pay. Your State may have water quality info). Neurologist would be the doctor to see. MGUS is considered asymptomatic, however, neuropathy is one of the potential early symptoms. I have polyneuropathy (8 years, 70 yo) diagnosed about the same time as MGUS; in my case a lack of sensation, less feeling in my lower legs and decreased pain that hasn't worsened over time. If changed sensation is affecting your balance it would be good to get PT for that. MGUS is a waiting game; progression to SMM or MM is only 1% a year so for most people it stays as MGUS. It is caused by a mutation(s) in bone marrow plasma cells and generally no known cause. Recommended are a healthy diet (low sugar and such), regular exercise, managing stress/sleep. Some people take curcumin supplements (an ingredient in turmeric). Here is some MGUS info: https://pmc.ncbi.nlm.nih.gov/articles/PMC7604635/#:~:text=Monoclonal%20gammopathy%20of%20undetermined%20significance%20(MGUS)%20is%20a%20common%20benign,(MM)%20and%20related%20disorders.&text=MGUS%20is%20considered%20asymptomatic%20but,with%20peripheral%20neuropathy%20(PN).

Thank you so much for your thoughtful reply. I am glad you have a good understanding and your MGUS is stable.

I was just diagnosed with MGUS after routine blood work and then some more. I have been googling and reading everything I can. My Kappa/lamda ratio is 38.91,my IGA is low and my IGG is high, IGM is normal. All my protein levels seemed to have jumped up in the last month which may indicate infection and inflammation. I didn't get to see a hematologist but the nurse really wants me to get a bone biopsy. I feel like this could give a false baseline-having read several entries here I am not sure what to do. Thanks for any insights.

@rustypenny
Welcome to the Mayo Clinic connect. It’s quite an emotional roller coaster ride when you are first diagnosed with MGUS. We all consult with Dr. Google and the results usually enough to make us anxious. Dr Google is a glass-half-empty gal.
Sometimes it takes a little while to find just the right physician. You want to look for a hematologist/oncologist who is an expert in treating multiple myeloma. MGUS is not cancer. For most of us, the risk of MGUS progressing into multiple myeloma is very low.
It’s important to try and relax as much as you can and not let your anxiety make you feel physically ill. It will. It will possibly even raise your white count. Your hematologist/oncologist will decide what kind of diagnostic testing you should have. You don’t need to react immediately until you get all the information and have a chance to sit down with him or her. Chances are, you will be in watch and wait limbo with the rest of us as usually MGUS does not require treatment. There is a lot of variation in the approach that different positions take even in terms of diagnosis. Not every MGUS patient requires a bone marrow biopsy. I was diagnosed over three years ago and have opted not to get one unless my lab work indicates that there is progression. Hopefully that will never happen. My numbers have actually gone down to baseline at the time of diagnosis after rising gradually for the first couple of years. I don’t expect my MGUS to go away, but I’m hopeful yet it will not become problematic.
You mentioned that you have not seen a hematologist. Is a referral to a hematologist/oncologist in the works for you? Have you spoken to your physician?

Thank you for your answer, I do feel quite anxious. I have always been a healthy person and basically had very little interaction with the medical profession, pretty much nothing more than check ups and vaccinations, never even had surgery. I am waiting to hear back from my doctor about the referral to a hematologist but it seems like more often than not one sees a nurse a few times before a doctor. I will keep on this