Does anyone else have MGUS?

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 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!!

@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/

@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. 😃 🪈🎶🎵

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.

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.

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 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.

Welcome to Connect, @gabadoo24. I also had to look up NXG as I’m not familiar with that acronym. That’s quite a rare condition. While we’re waiting for other members who may have NXG to pop into the conversation, it’s great to have you here in the MGUS support group where you’ve already been greeted by @allstaedt57 and @nancyworld.

You’re also being treated for CLL. What types of treatment are you receiving?

I was wondering, while I wait for an appointment with a hematologist, if someone could help clarify one of my test results.

I'm in Canada and maybe reporting is a bit different, but this is how it shows on my labs.

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Protein Monoclonal Band 1 : 2.1 g/L ( *Note that this is per L not dL)

Known case of IgG kappa paraproteinemia.
A band persists unchanged in gamma region. Slight background gamma
suppression.

Light chains Kappa Free: 17.5 mg/L
Light Chains Lambda Free: 10.6 mg/L
Ratio: 1.65

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Thoughts?