Does anyone else have MGUS?

Hi, I was dx. Oct. 24 with MGUS. As of last May my M spike was .08 & I had 1 lambda showing itself. I asked if we could delay the entire body bone X-rays and my Hematologist agreed unless my numbers changed significantly. (I didn’t want the xtra radiation ☢️ yet)
My next blood evaluation is Nov.
As with all of us with MGUS, it’s a waiting game. I was told at my age 68 that I would probably die of something else. Comforting huh?
I have a friend w/MM and she had gone thru terrible things but is still surviving after 12 yrs. My heart goes out to all suffering anything in relation to our diagnosis’s MGUS, SMM or MM. Bless all of us. Perseverance is our motto!

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!

I’m smoldering. Going to a neurologist in Feb (that’s how long our wait times are) but I suspect the beginnings of neuropathy which is not uncommon for MGUS/SMM/MM. I learned about doing in bed foot stretches by a Tai Chi instructor. It’s basic; gently, slowly after waking and before getting out of bed, and with the covers off the feet, stretch them. Forward stretch, the other way, slow half circles one way, then the other, repeat. Wiggles toes. Key is gentle and slow. Feels good, gets the blood there and warms up muscles. Only need to do a few minutes. Then I put feet on floor and move them around, wiggling toes. Then I stand. Another thing is a rocking motion while standing. Hold onto counter until confident of balance. Rock forward then backward on feet. Some suggest doing the rocking while brushing teeth. I don’t! Walking is super great, I do about 4-5 miles throughout the day, less in winter. Sometimes I find stairs to walk to keep those muscles. Slowly down stairs to save the knees. Biking is great for knees, even a mile which goes by fast, I no longer bike on hills, now I choose mostly flat. I agree, move, move, move! Even if slowly and gently. We’ve already won the race, this is our well deserved cool down part of life.

I have MGUS. Going through some pain with neuropathy in both my feet. I started walking in the mornings last week. First to take off the weight I put on, and 2nd to keep the blood flowing. Does anyone push themselves to walk and do you find it helps a little?

Many biopsies coming up at Mayo, for Amyloidosis.

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!

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.

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!