Does anyone else have MGUS?

I was diagnosed with MGUS 23 years ago. My numbers have remained stable for all these years. Since there’s no treatment for it, I wouldn’t worry. Just have your bloodwork done every 6 to 12 months. I’ve put it aside mentally If you have symptoms see your Hematologist. Severe pain and fatigue would be what you would be looking for. I hope you are like me and it just becomes something to watch and nothing more. Best health

There are definitely links between MGUS and neuropathy. I have had MGUS for 3 years and neuropathy for about a year. About 20% of people with MGUS develop neuropathy.

You need to see a hematologist

Hi @sissypuss Welcome to Mayo Connect. It can be pretty startling when we discover something on our charts and have no idea what it means.
MGUS~Monoclonal gammopathy of undetermined significance (MGUS) is a blood disorder that affects plasma cells in your bone marrow.
People can have this slowly developing condition for years without any symptoms. It’s usually found on a routine physical with blood work.

We have a number of members in this support group who also have MGUS and there are quite a few discussions besides this particular conversation. You can find those by simply typing MGUS in the search bar above. That will provide a listing of the different subjects associated with MGUS.
Since you’re new to the diagnosis, it can be helpful to read about your condition. To get you started I’ve posted 3 excellent sources so that you can learn more about MGUS.
https://www.healthline.com/health/how-serious-is-mgus
~~
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
~~
https://my.clevelandclinic.org/health/diseases/17744-monoclonal-gammopathy-of-undetermined-significance-mgus
If you found comment on your patient portal, was this through routine blood work with a primary care physician? If so, they should be following up with you for a referral to a hematologist( a blood specialist). Was this a recent test? Were you having any symptoms weakness, tingling or numbness?

Hello, it’s Jeffery, I just wanted to say thank you for the hugs. I’m glad I found the platform outside of social media that I could meet and speak with like-minded people. I just wanted to send you a private message letting you know I reciprocate and send. I guess you would say a hug back !! Tag you’re it lol.

My MGUS was found through routine blood work (August 2022) Quest Lab suggested 2 more tests be done. Those produced the MGUS IgG results.
Prior to that I had high calcium (now diagnosed with hypercalcemia) and I have had numbness, tingling from my ankles down to my feet for some time prior to MGUS diagnosis. Very annoying. Otherwise, doing well, walk 2-3 miles every morning with neighbor.
@gingerw has been very helpful with her comments.

Good morning, @redgiles. I love to hear that you’re walking 2-3 miles every morning! That’s such a wonderful way to get the day started, isn’t it? It really helps to keep our lives in perspective and to encourage positive thoughts! I’m a daily walker too and excited that we’re finally having some glorious weather where I live. Spring has erupted in a showy fashion…so many flowering trees, lush bright greens and all the spring flowers are in bloom. Birds singing everywhere! Love it! It seemed like winter would never end.

In spite of your diagnosis and neuropathy, it sounds as though you’re doing really well. @gingerw has walked your similar medical path and is an amazingly strong, resilient and inspirational friend. So it’s no surprise that she’s been very helpful for you. Most of us in Connect have gone through some challenges and medical adventures so I’m happy you’ve found your way to us.
You’ve probably chatted about this before, but are you on any medications for your MGUS? What’s the treatment for the hypercalcemia?

No meds have been prescribed for MGUS yet (are there any) - My endocrinologist at MD Anderson Houston noticed my high calcium and had me stop taking calcium about a year prior to MGUS diagnosis. I presume that was the 1st sign of MGUS. My tingling/numbness in ankles/feet has been for some time. I mention it to primary care whenever I see her. I did have horrible restless legs some time back, but that stopped and moved to feet. I take Gabapentin and she added Ropinirole. I have read in this site that Gabapentin is taken by some. My endocrinologist got me an appt. with Dr. in Myeloma dept. at MDA. First appt. was Feb 2023, they did full body XRAY head to toe, 24 hr urine collection and tons of bloodwork. My next follow up is scheduled for Aug 2023. Would appreciate any suggestions for meds etc. Thanks !! Jackie in Texas

Hi Jackie, MGUS is a watchful waiting condition so there aren’t medications specifically. I’m sorry, I had phrased that poorly in my last reply. Some patients who have MGUS might have symptoms associated with anemia, osteoporosis, neuropathy, etc., which might require some treatment such as your neuropathy. You’re in great hands down there in Texas with MD Anderson. ☺️

I so admire your commitment to walking. I need to do more. I find it so uncomfortable to walk with my neuropathy that I avoid it. I’ve gotten wobbly and have lots of foot pain.
I did walk all over the river towns of Germany touring on a recent river cruise so my avoidance is selective, it seems.
So, you have inspired me. Thank you!
Patty