Does anyone else have MGUS?

I am also n Fl. Central part. Welcome home

I had to read through your story a couple of times! Wow, you could write a book with some of your adventures…medical and otherwise! You sound pretty rough and tumble…not much holds you back, that’s for sure!

Neuropathy is a pain in the…well, anywhere you have it! It’s not uncommon to have those symptoms with any type of bone marrow/blood disorder along with age, medications, inflammation, diabetes, etc.. I’ve gone through it myself and it’s no picnic

There are quite a few conversations in the neuropathy group that you might find helpful.
Here’s just one of many:
https://connect.mayoclinic.org/discussion/neuropathy-of-the-feet/
Here is the link to the neuropathy group so that you can look at all the discussions happening. Don’t hesitate to pop into any chat!
https://connect.mayoclinic.org/group/neuropathy/
I hope you can dust off that bike when the weather gets a little nicer…well, that depends on where you are! LOL. I’m in the cold northern part of the US right now. Getting ready to head back to Florida after a holiday break up here with family.

@kayabbott, hello. I have celiac as well. My understanding of the connection between Celiac and neuropathy is that the antibodies created in response to gluten ingestion is what causes the nerve damage. It sounds as though like me, you are compliant with the gluten free diet. Who knows?
I wish that physicians (I’m generalizing) would take the discomfort of our neuropathy seriously. Whatever the etiology, it is life-changing as it impacts comfort and level of activity. So you’d think that it would be important enough for them to get excited about.
At any rate, no physician has ever connected those dots for me. I’m going to bring up celiac induced neuropathy to my PCP or hem/onc doc and see how many dots end up on top when I roll those dice. Thanks for that suggestion!
Patty

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, @like2dance2 Your @name made me smile! 💃 I enjoy dancing too, but apparently blessed with two left feet so all my dancing looks like Elaine’s contortion dancing from Seinfeld. 😅

You’re in good company in the forum with other members who also have been diagnosed with MGUS so don’t hesitate to pop into any conversation.

What is happening about your brain aneurysm? Does this limit your dancing at all?

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....🤔

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.