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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recnacgone5 | @recnacgone5 | 1 day ago

In reply to @steveutnv "I have been diagnosed with MGUS for 8 to 10 years now, male age 77. Recently..." + (show)

That's certainly great news! So glad that no lesions were found! Definitely a big relief! Continue well and take gentle care of yourself!

2121 | @leslie2121 | 3 days ago

In reply to @leslie2121 "That’s good news! May I ask what your FLCs were initially, and what they are now?..." + (show)

I’m a woman, 66 years old.

2121 | @leslie2121 | 3 days ago

That’s good news!
May I ask what your FLCs were initially, and what they are now?
I also have MGUS with very low/unquantifiable M protein (4 years now) but my lambda FLCs have fluctuated between 4-5.75 mg/dl ( I think are the units).
The kappa has stayed with in normal range for the most part.
I also have a biclonal mgus apparently.
Go yearly now and my oncologist isn’t concerned. He also thought the FLC elevation isn’t related to mgus. 🤷🏻‍♀️

But also doesn’t know what that would be either. Doing well otherwise.

steveutnv | @steveutnv | 3 days ago

In reply to @recnacgone5 "Hi @mjlandin, I was just recently diagnosed with Mgus. Found out by accident, had labs for..." + (show)

I have been diagnosed with MGUS for 8 to 10 years now, male age 77. Recently had a scare when my hematologist ordered a full body bone scan because my kappa (I think) light chains keep going up. The process involved 31 x-rays of my bones, not fun. He said they would look for bone lesions and if they were found it would likely indicate a progression from MGUS to multiple myeloma. Just got the results this morning and hooray, no sign of lytic bone lesions! What a relief!

edl75 | @edl75 | 3 days ago

In reply to @recnacgone5 "Hi @mjlandin, I was just recently diagnosed with Mgus. Found out by accident, had labs for..." + (show)

Do you know what the protein level was? MGUS itself is not concerning as long as your levels stay at the MGUS levels. Checking your blood levels every 3 or 6 mths is the proper thing to do at this point.

Ginger, Volunteer Mentor | @gingerw | 4 days ago

In reply to @recnacgone5 "Hi @mjlandin, I was just recently diagnosed with Mgus. Found out by accident, had labs for..." + (show)

@recnacgone5 Welcome to Mayo Clinic Connect! I see that you have been a member since October 2022, and this is your first post!

A very good resource for information is the International Myeloma Foundation myeloma.org, to get insight to MGUS and what it is. As many will explain, they were diagnosed with this condition when doctors were looking for something else.

After you read that website, we'll be happy to answer your questions!
Ginger

recnacgone5 | @recnacgone5 | 5 days ago

Hi @mjlandin, I was just recently diagnosed with Mgus. Found out by accident, had labs for something else and my Rheumatologist informed me that I had a protein in my blood that concerned her. She referred me to a Hematologist who ordered tons of lab work, results showed that I have Mgus. I don't have a clue about Mgus and how it works, what it means, what to do next, etc, etc. All I know is that she wants to check my blood every six months. I need more information on this condition because she really didn't go into detail about symptoms or other things that I should look out for, if I should be concerned or not, so I really don't know what I have. I want to go on YouTube to see if I can learn more about Mgus. Whatever you learn, please share it with us. I would deeply appreciate that!

2121 | @leslie2121 | Jun 22 4:26pm

In reply to @solarus "Thank you so much @leslie2121 for replying! So your experience was that FLCs went up slightly..." + (show)

Well, my lambda light chains have been fluctuating a bit above normal since diagnosis about 4 years ago. So not sure the rabies shots or IG made a difference.

solarus | @solarus | Jun 22 1:40pm

In reply to @leslie2121 "Hello! I don’t know the effect on my FLCs - they have increased slightly but the..." + (show)

Thank you so much @leslie2121 for replying! So your experience was that FLCs went up slightly after the shot and didn't come back down even after multiple months?

Mine is a light chain only MGUS, so FLC is the main issue.

In your case it was a dog in a foreign country so you absolutely made the right call.

Mine is a scratch from a squirrel so they doctors aren't really pushing the rabies shot, they're letting me decide either way. Squirrels are considered a very low risk for rabies. But I wanted to see if it would flare the MGUS since it's 4 shots and IG to decide if that risk was worth it.

What a choice - rabies or myeloma! 🙂

2121 | @leslie2121 | Jun 21 2:36pm

In reply to @solarus "@leslie2121 Could you please share how your FLC ratio changed after the rabies? I am doing..." + (show)

Hello!
I don’t know the effect on my FLCs - they have increased slightly but the M-spike has remained “not clearly identified “. I am lambda elevated w kappa with in normal range & still wnl ratio.
I worried it would affect it all but didn’t think I could risk rabies as it’s almost 100% fatal.

I am hoping it stays “dormant “. On yearly labs & appointments now. Doctor doesn’t think the FLCs are related to mgus but maybe autoimmune? Nothing appears active currently so not going to go digging as I am 66 and living my life!
Good luck to you! 😊

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