Does anyone else have MGUS?

Hi,

Free Lambda Chains 53.8 mg/L
Free Kappa Chains 9.4 mg/L
Ratio .18

What changed your categorization to smouldering? What is your m-spike? Have you seen much progression over time?

A lot more(250) lambda, 20%in bone marrow and the checkup is next week so will find out more then!
Mascot

OK, well it sounds like you've been aware and working to keep your numbers in control for a long time and are doing a good job at that. (I think I saw you mentioned 10 years somewhere).

I don't have a sense for how these numbers move yet, and haven't had my first bone marrow biopsy (can't say I'm looking forward to it either but maybe not so bad). I hope your numbers are headed in the right direction in your next set of results - good luck!

Is the M-spike number itself less relevant to your issue? I had mine done by two different labs, and the first was 1.9 g/dl, then 2 months later 1.67 g/dl, which seems to be in the high risk category either way.

Once again, thanks and good luck!

Yes I have it. Was diagnosed close to a yr ago.

I was diagnosed with MGUS, in 2015, I believe, when a Dr. was checking why I was having numbness and tingling in both feet and discovered a strange protein in my blood and referred me to a blood Dr., and have appointments every 6 months with blood tests and every 12 months with urine tests. My feet continue to get more numb at times and less numb at times and sleep time it's not as bad but the longer I sit or stand it works it's way up my ankles. I use to be very active walking and hiking but now in the later 60s, that doesn't happen too often and really slows down my activity. I worked in mining for 40+ years and retired, but is anyone find anything that truly helps. The Drs., say no cure, just monitor. Any ideas?

I was diagnosed with Kappa light chain MGUS in 2016. M proteins showed up last year but are at baseline. Only symptom I have is some polyneuropathy, but that could be from celiac (2009) as well. My Kappa/Lamba ratios have been ramping up for years (5.9 [normal is 0.26-1.65[) but still at 1% risk of progressing. I've kept a food log since 2009 so don't eat anything that causes GI problems, a mostly FODMAP diet with lots of tumeric/black pepper (tumeric may or may not suppress the deranged plasma cells) and almost no processed foods. I'm 69 and also exercise a lot and keep my weight down. I met my new oncologist after seeing Barbie, so his resemblance to Ken may have been colored by that; he is quite perky. Humor is good medicine.

Welcome to Connect,@j2c There are a number of other members in the MGUS support group who also have some numbness in their feet. I found a discussion started by @quarksunite who is joined by others sharing their experiences of what they’re going through and what may have worked for them to lessen the annoyance of this condition. I hope you find some helpful information.

Does anyone have neuropathy related to MGUS?
https://connect.mayoclinic.org/discussion/mgus-neuropathy/
I’m sorry to hear you’re not able to keep up your hiking activities like you used to enjoy. It’s hard to give that up! Do you do any biking?

Yes I was diagnosed with Kappa Light Chain MGUS in November. M-Spike of .5 was discovered during testing for something else. Kappa 73.4, Lambda 13.5, Ratio 5.42., no lytic lesions, but they did find a brain aneurysm. Oh happy day. Only neuropathy in toes. We are ball room dancers. It would break my heart not to be able to dance. Watchful waiting on all accounts. Trying to stay positive and live my life.

I have been diagnosed with a rare CLL, MGUS, and NXG. B cell therapy is helping with the CLL. It's the nxg that's the pain in the ass. Skin lesions, and I have one in my eye. Steroid cream helped. Now after everything I've been going through I need at least two surgeries to repair my lower eyelid which is gone, and the hole in the side of my nose. Anyone else have nxg? I'd like to hear about it. I'm staying positive with humor, family, and music!

I use to ride bikes up to August of 2022 and got COVID in early August and was flown out by a helicopter 100 miles away, because a "Dr.", said I was having a heart attack and when I got to the other hospital ER, their heart Dr., ran me through all kinds of tests with contrast and stuff and then asked me to tell him the "story!" After, I told him I thought I was going to have him rushed into Intensive Care....he was laughing sooo hard, he couldn't catch his breath...AND THEN, he said, "Have you been working with your arms?" and I said, "Yes, and he told me, I had an inflamed shoulder and sent me home!!!!! I then went hunting on horseback and rode many miles and it jarred my neck bad, and so I've been dealing with THAT issue, so with that, MGUS, neuropathy and neck issues and age related stuff. The bike needs some dusting! I am beginning to think that nobody in the medical profession from the east coast to the west coast can get together and come up with a solution. It seems I read different people's issues with MGUS and neuropathy and different Drs., have different theories or suggestions what causes all this stuff. One Dr., told me in a few years, I wouldn't be able to walk..PERIOD!! That was 2015 and I can still put one numb foot in front of the other. If I stand on hard ground or sit, it seems feet really start warming up and tingle worse and seems to go part way up ankles. I read about people on here far worse off than me, still surviving and 80+ years old, with ALLOT more issues than I got, soooo....🤔