Does anyone else have MGUS?

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've been told to just keep moving around and walking (which I started doing around my neighborhood). Purchased a good pair of NB sneakers which are pretty much cushioned and make it easier for me to walk in them. I find sitting still just aggravates things so I try to not sit around that much. Good luck to you in February. Who knows maybe someday they'll come up with some solution. Right now my Dr pushes the meds. No thank you, I don't like the feeling I got after taking gabapentin for 4 days. That was enough to convince me I had to find other remedies....

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!

BTW: happy no bone lesions for you. Wonderful news!

I was diagnosed jan2025.
IgM 15g/l
Flc kappa 6. It has risen to 7 in 6 months.
Is this signifcant ?

Yes I have MGUS; was diagnosed 23 years ago in 2002. It is truly a waiting game.
While my M spike and FLC lambda have gone up, they are reasonably stable. My previous Mayo hematologist (who retired) wanted bloods drawn every 3 months. My current hematologist is more relaxed about all of this and I have blood tests every six months now. After 23 years I do not get nervous anymore waiting for results,
I guess time will tell. I do not have symptoms that I know of.

@maddie2023 I feel you. I did not like gabapentin either. I am taking 200mg daily of pregabalin now. No side effects but I’m not sure it’s doing much to change the narrative.
I keep moving. The pain that I get in my toes is sometimes pretty extreme. I just push through it and keep on keeping on. At 72, I think being able to do that is going to be a pretty good adaptive life strategy.
Water aerobics has helped a lot of my friends who are arthritic and although it’s kind of a pain because we don’t have a heated pool in my community, I think I’m going to drive to use the heated pool in a nearby community.
I’ve also been doing physical therapy due to a fall and that has helped me tremendously by strengthening my core. I guess Medicare has a lifetime cap on physical therapy and I am reaching that maximum. I think that’s ridiculous because physical therapy can assist in keeping people out of nursing homes and help them live more independently even with physical limitations. I have my last session tomorrow and after that I plan to replicate what I’ve learned in physical therapy at the senior citizen center and work out on their machines and with free weights
I hope you can find some relief. If you find something that gives you good results, please do post them.

@pmmpmm - thank you so much for all the helpful information. I find that moving around is my best bet too. The night time comes around, and then oh well, it's a gamble on what type of night it's going to be. I find relief in the pool also. I would definitely get to that heated pool if I were you. I'm trying to find out about physical therapy myself. I'll take anything I can do for even if just one day of comfort....

In the meantime I have a foot massager, which has a vibration mode. I use it once (sometimes twice) a day. It gets the circulation going and improves nerve function.

@hsminc Happy to see you've been stable for some time. I'm new to this so next month makes 1 year for me. Thank you for sharing your story....

@fredes - yes it was. thank you. Take care of yourself and always get checked.