Does anyone else have MGUS?

@loribmt @gingerw @pmm
I have been going to MDA for some years for my bone density and the last time I visited my PA she quizzed me about calcium D3 I was taking. She asked me about my consumption of dairy products. My bloodwork showed high calcium levels ( I now know that was probably a beginning sign of MGUS). I was osteopenia at that time. She advised me to stop taking Calcium. I now have hypercalcemia. The full work up at MDA last Feb 2023 referred to it as osteoporosis on my diagnosis. My numbness/tingling in my ankles/feet has been for some time. I am able to walk every day 2-3 miles with no problem. But the numbness/tingling continues. Other than all that, I'm feeling great !!

@pmm I hope you see the message I left with @redgiles about walking, using walking poles. They really help me keep my balance, and offer confidence in my steps. At this time, my larger issue is that I do daily home dialysis, and simply cannot do much while dwelling fluids. So, that time is delegated to quiet activities, like crochet or writing, even napping. Not even pulling weeds because the additional fluid makes it uncomfortable, as does going for a walk.
Ginger

@redgiles I so envy your daily walking! I was doing that, also, and have become very acquainted with the residential streets in my little town. But, I lose energy quickly now, and need to remember that anytime I am out, there is that same distance to get home! Using walking poles help me a lot to keep my balance, something that @pmm may find helpful; I use a cane almost all the time otherwise.

While there are not specific medicstions for MGUS, watching and dealing with some related symptoms can be useful. Watching your labs tests, eating healthy, getting enough rest, remaining as stress-free as you can, seem to help. Gosh, sounds like how we handle so many other conditions, doesn't it!? I tried low-dose Gabapentin for my neuropathy, but the therapeutic dose was way above what my ailing kidneys could handle, so I stopped it.

Monitoring MGUS was short-lived for me, as I rapidly moved to Smoldering myeloma, then onto active myeloma within 2 years of MGUS diagnosis. I blame it on being an overachiever! No one else I know morphed that fast.

So glad to hear you have a neighbor to walk with!
Ginger

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

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. ☺️

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

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?

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.

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.

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
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https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
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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?