Does anyone else have MGUS?

@anne13 Welcome to Mayo Clinic Connect. I see you have been a member here for quite a while, and this is your first post.

It's not unusual to go a long time with no marked change in numbers, when we have MGUS. My MGUS was also IgM Kappa. When you say there has been an increase in numbers, is your medical team concerned? Have they talked about doing anything further for testing?
Ginger

@buntO1 I wonder if having a more complete workup would help, and see if there isn't more going on beside MGUS? Has your medical team ever brought up the idea of more testing? Do you have any other health issues that might be contributing to your situation?
Ginger

Hi all. Three questions as a newly-found MGUS IGA lambda 52-year-old, thus far assessed as intermediate-low risk per Mayo criteria (still need to finish imaging). I'm in New Mexico, where a lot of folk I know go out-of-state for specialty care or end up moving. (There are about 8 neurologists in New Mexico on my minimal state insurance, and over a year wait for each).

1) Is there a significant radiation risk of a PET-CT versus MRI? I had a "few small vague lucencies which may represent venous lakes although lesions cannot be excluded" on my skull, but no other findings in the full-body skeletal survey. My hem-onc recommended PET/CT, but only after it sounded like they wanted me to decide.

2) Since we don't have neurologists, would a PET/CT and/or an MRI help my hem/onc detect any non-MGUS illnesses that may be causing my constant severe electric shock sensations, like MS? If so, I'd lean towards one over the other. (My nerve conduction and EMG are normal).

3) I'm going to splurge on an out-of-pocket, out of state specialist consultation for my neuropathy/neuralgia. Would a MM specialist know how to recommend assessment for the neuropathy/neuralgia, or should I rather consult with a neurologist who specializes in neuropathy and knows a bit about MGUS?

Thank you for your help and guidance. I won't interpret anything as medical advice; I'm just shooting into the dark here.

This is something I've been diagnosed over three years ago. I have my blood level checked every two week at the Oncologist hematologist. I've had two BMB. I have to get a blood transfusion every four to six weeks. The doctors do not know why my body is not making red blood cells. It's very frustrating.

Thanks, I hope so also.

Good question, but they made it seem like it’s nothing to worry about, and I’ve been having these nerve symptoms for 11 yrs now,progressing from my feet and going up my body.
I have an appt next week for labs,I will ask when I see doc, if it’s related to my MGUS.

Curious to hear more from you and others and possible symptoms. I‘ve been diagnosed a year ago with MGUS IGM Kappa Light Chain and in 2019 with neuropathy. This year during an inpatient neurology check up I was diagnosed with small fibre neuropathy. My oncologist/haematologist doesn‘t think there is a connection as my neuropathy is developing very slowly. I just had my 6 months blood check last week and awaiting feedback from my specialist. Any suggestions or situations I need to be especially careful with.

I was diagnosed 10 years ago with a M spike and IGg Lambda and now I am having low rbc, wbc and platlets. I just had a BMB this past Thursday and waiting and worrying about the results. I also am having leg cramps which may be from the anemia. It's a very confusing disease.

Good morning. I was diagnosed with MGUS IgM Kappa with a small fiber neuropathy in 2012. Numbers had been stable but last three labs have shown increase in Kappa and FLC ratios.

Why don't you think MGUS aren't causing your nerve related problems?