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.