Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

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?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Patty, Volunteer Mentor | @pmm | May 12, 2023

In reply to @cgerwig66 "I'm starting to have spells my blood sugar gets really low and I'm not diabetic." + (show)

My blood sugar levels are overachievers.

cherylmcg | @cherylmcg | May 13, 2023

In reply to @cgerwig66 "I was diagnosed with mgus over a year ago. Since then I have been really sick..." + (show)

I have had MGUS for about 5 years which is low but slowly increasing. I have neuropathy and fatigue. I recently saw a number of super healthy women playing pickleball in the evening and was overcome with sadness at my disability.

melij | @melij | May 14, 2023

In reply to @cherylmcg "I have had MGUS for about 5 years which is low but slowly increasing. I have..." + (show)

cherylmcg such a valid feeling - losing out in so many activities has been an issue for me as well. My friend said it was like grieving a loss and to acknowledge those feelings. I have learned to adjust how I do sports to my changing level of ability and not worry about those super healthy women …..xo 💓

Clifford Gerwig | @cgerwig66 | May 14, 2023

In reply to @cherylmcg "I have had MGUS for about 5 years which is low but slowly increasing. I have..." + (show)

I hear your pain the neuropathy and fatigue are horrible it changes your life !!!

cherylmcg | @cherylmcg | May 14, 2023

Thanks for the hugs and empathy. I do the best I can but now also find RA May be causing lung disease-I guess we all have to face our decline…..

sissypuss | @sissypuss | May 16, 2023

In reply to @gingerw "@mjlandin Welcome to Mayo Clinic Connect. There are several discussions here in the Blood Cancer &..." + (show)

I have it. I just found it on my chart and don’t know what to do next.

susanh824 | @susanh824 | May 17, 2023

I’ve had it for somewhere between 10-15 years. I see a hematologist and oncologist once a year while the numbers have increased steadily, I am not at the smoldering level yet, and my oncologist says I have only a 10% chance each year of developing multiple myeloma. I’m 64.

2121 | @leslie2121 | May 17, 2023

In reply to @susanh824 "I’ve had it for somewhere between 10-15 years. I see a hematologist and oncologist once a..." + (show)

Hi Susan:
I was diagnosed about 2 years ago with MGUS from routine physical- trying to explore causes of osteoporosis- also newly discovered. I’m also 64, and thought I was healthy.
I’ve taken some powerful osteoporosis medication and trying to determine if that’s why I have more fatigued or if it’s from the MGUS?
MGUS supposedly is asymptomatic but I wonder.
Thought I’d reach out.
I’m supposed to be a little above average risk but who knows about these statistics,right?
Wishing you good health- encouraging to hear you’ve been stable for 10-15 years.

2121 | @leslie2121 | May 17, 2023

In reply to @leslie2121 "Hi Susan: I was diagnosed about 2 years ago with MGUS from routine physical- trying to..." + (show)

I also go yearly for bloodwork. I’ve found that exercise is essential to feel my best.

susanh824 | @susanh824 | May 17, 2023

In reply to @leslie2121 "Hi Susan: I was diagnosed about 2 years ago with MGUS from routine physical- trying to..." + (show)

Hi Leslie,
They scanned my bones last year and found lesions that turned out to be osteopenia. I’m not on any medication for it though, except increased calcium supplements. The only reason they did the bone scan was because I had lost a lot of weight without trying. That turned out to be because of another illness called exocrine pancreatic insufficiency. My next oncology appointment is in July, and I’ll be curious to hear what the results are this year. Best of luck to you!