Does anyone else have MGUS?

My neuropathy hasn't progressed in the last 8 years. It is mostly minor loss of feeling (including pain) in extremeties. My lastest oncologist says no correlation between neuropathy and MGUS, but other oncologists and neurologists say there is. I suspect the other doctors are right.

I had to look up NXG, what I came up with was "Necrobiotic xanthogranuloma (NXG) is chronic, progressive, granulomatous disorder with the potential to affect multiple organs, with a notable strong association with paraproteinemias and/or lymphoproliferative disease that demands lifelong monitoring and vigilance."

I learn something every day.

I currently, just have IgA Kappa MGUS. Diagnosed 2/2023 due to symptoms of neuropathy although slight; lost my husband to MM 7/22. He was a young 70 before it hit, I just turned 66. Go figure. Watchful waiting and prayer is all I have at this point. Hopeful.

@gabadoo24 , I hope you find a fellow NXG sufferer here to compare notes with. It sounds difficult.

I'm finding music very helpful for my own state of mind. 😃 🪈🎶🎵

@j2c , @kayabbott , @like2dance2 , others 😂

I'm also dealing with MGUS and neuropathy. I started having numbness and tingling in toes and soles of feet in July 2023 and a couple of months later, when it seemed to be progressing, I went to my Mayo primary care clinic. Turns out I have mildly elevated kappa free light chains with FLC ratio of 5.64, no M-spike. The subsequent bone marrow biopsy confirmed MGUS.

My concern is that the peripheral neuropathy has moved up my lower legs up to the knees now, and during a bad respiratory illness I'm still recovering from, I had burning on the outside of one thigh. (The neuropathy mostly consists of numbness and tingling with continuous twitching in the right foot, and now some burning sensations in the right leg.) So to me, the PN seems to be progressing fairly rapidly.

I haven't been able to talk to a hem/onc at Mayo, though one consulted with my doctor on the diagnosis. I did have EMG/NCS testing and met with a neurologist, who said that the neuropathy is very mild. It doesn't affect my strength at this point, but I can be a little unbalanced.

Anyway, I found a study program for MGUS and other "precursor" people out of the Dana-Farber Cancer Center in Boston. They are affiliated with Harvard Medical School. You can submit your medical records and blood samples and they'll put you in their study cohort for free. There's more info here for anyone who might be interested: https://www.enroll.pcrowd.org/

Yes, I am past that half century mark as well, and try to stay active, but one Dr., tells me MGUS will cause neuropathy to get worse and I won't be able to walk again, and I read on here some of the people going through MGUS, it is just numbness and no pain and another person will say, there Dr. says neuropathy isn't caused by MGUS, and then some say they got it in the military and like myself, I'm not a veteran! So allot of questions remain unanswered. I absolutely find this forum extremely helpful and enlightning!!

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....🤔

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!

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.

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?

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.