I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
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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
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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. ☺️
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.
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!
@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!
@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.
@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 !!
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.
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.
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.
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