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?

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ladyesheryl | @ladyesheryl | May 18, 2023

In reply to @sissypuss "I have it. I just found it on my chart and don’t know what to do..." + (show)

You need to see a hematologist

Clifford Gerwig | @cgerwig66 | May 18, 2023

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.

bg411 | @bg411 | May 17, 2023

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

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!

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.

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.

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.

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.

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…..

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 !!!

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