Does anyone else have MGUS?

@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

@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

@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 !!

@gingerw

I have learned to take naps. I'm quite good at it now !! My husband is quite the comedian, he now takes pictures of me napping. I have quite a collection.

I knit & crochet.....I need to get back to some unfinished projects !

@redgiles Recently, our cat climbed up in my arms while I was sitting at the table having my morning coffee. She curled up in my arms [okay, she is spoiled and I didn't want her sliding off my lap] and we both drifted off. My husband took a picture of both of us snoozing, thinking it was quite cute. I can nap almost anytime, anywhere!

I crochet, and find it relaxing to do at night.
Ginger

I've just been diagnosed with MGUS this last week, and I wish I could find more to read about it. Being told that it doesn't have symptoms, while never being asked about any, it's rather invalidating. My doctor here in Colorado is retiring soon, and I have to wait for the new one in five months and hope she's a bit more forthcoming. Do you feel the same as you did before whatever led to your diagnosis?

@mgusnewbie Welcome to Mayo Clinic Connect. You have found a great group of people here, who can share their experiences. Here is a link of what Mayo Clinic has to say about MGUS.

Suffice to say that many of us find a diagnosis of MGUS while our doctors are looking for something else! I hope your doctor has referred you to a hematologist oncologist, and will initiate quarterly bloodwork to keep an eye on things. The vast majority of us never go beyond the MGUS stage. After getting the diagnosis like you have, it is important to not dwell on it, but continue to live your life as you have been doing.

https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362#:~:text=Monoclonal%20gammopathy%20of%20undetermined%20significance%20(MGUS)%20is%20a%20condition%20in,of%20most%20of%20your%20bones.
Ginger

I was diagnosed with MGUS about 18 months ago (so far just high IGM and low IGA and IGG.) For the past 5 months I have become more and more fatigued and I have been checked for anemia, B12, Folate and iron. My hematologist says I should not be feeling fatigue from the MGUS at this point. I am starting to get worried because I have always walked 3-4 miles outside every day and this is not like me to feel so weak. I am having a stress/echo with a cardiologist next month but this feels more like anemia and yet my labs are OK. The fatigue is intermittent but so often now that I’m concerned. I am 69 years old, 125 lbs and have always been active and eat healthy. Anyone else with MGUS having a problem with fatigue and did your hematologist tell you the same thing? Thank you for any ideas.

I was suffering fatigue a lot. Not sure I could completely link it to my MGUS but I have found Curcumin in high dose (6000mg a day) to be beneficial in reducing the fatigue and have slept better and gained energy.

Greetings! I am losing a lot of my energy as well but I attribute this to a combination of age and neuropathy…which limits my enthusiasm for walking.
My hem/onc doc says that I should not be having symptoms from MGUS so I’m assuming that my primary physiological nemesis is age (here insert expletive). I do have type 2 diabetes which is well controlled.
I try to eat healthy and do an exercise class for seniors and water aerobics. I am no longer taking those lovely, long walks, however. I miss that.
I think part of the challenge of dealing with chronic illness and an aging body is to find ways to stay engaged in life, and not throw up one’s hands and retreat to the couch. There are many, many people who complain about fatigue and neuropathy who also have MGUS. I believe that it effects each of us differently and you know your body better than any physician ever will. Make sure your doctor really hears you and what you are experiencing. Your doctor should rule out anything outside of the MG US that might be causing your fatigue. Sadly, I think that actually being heard by physicians is our biggest battle.
Let us know how you are doing.
Patty