Does anyone else have MGUS?

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.

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.

@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

@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

@remainanonymous You pose interesting questions. A PET scan can be thrown off if there are chemical unbalances in your system, not to mention the radioactive factor. An MRI can take quite a while to do, where a CT scan is a few minutes. Whole body MRI has to be done in 4 segments, meaning about 2 hours, where a whole-body CT is about 5 minutes or so. A CT scan is better for showing bone and joint issues, blood clots, and some organ injuries, while an MRI is better for inflammation, torn ligaments, nerve and spinal problems, and soft tissues.

To answer questions #2 and 3, you probably should speak to your doctor and get their input.
Ginger

@laurinea greetings! I’m glad you found us.
I don’t know why medical professionals don’t sit patients down and talk to them expeditiously. I know they’re busy, but I don’t know why they make you live with your anxiety so long.
The truth is, unless they find some comorbidity, they probably are scratching their heads a little bit about your symptoms. Typically MGUS is benign. But… There are a bunch of us that do have symptoms that we assume are related to MGUS because they can’t find another etiology. 🤷🏼‍♀️
I have neuropathy in my feet. Frequent nausea… gastrointestinal issues, malaise, hot flashes…loss of appetite. I had all of that after MGUS was diagnosed. My white count went up…I was sure there was something horrific going on. Turned out to be Dr Google induced anxiety.
Your symptoms preceded your diagnosis so you know that’s not the case for you.
Call your Dr and insist on having a sit down sooner than later. I am polite, but insistent. Write all your questions down and ask for an explanation for your symptoms one by one. Ask for referrals to specialists if your physician does not believe they are MGUS related. You need answers. If you feel that you need an advocate ask if there is a medical social worker attached to the practice. If you go it alone, keep calling. Show up. Offer to sit in the waiting room until you wear them down.
MGUS is a condition that typically does not advance to multiple myeloma. It is a condition that requires watchfulness for the rest of your life, however. So find the right fit in the form of a hematologist/oncologist, who is diligent, answers all your questions, and is available for you. Your doc may not have the best bedside manner, but you want an excellent clinician who has a great deal of experience treating full-blown multiple myeloma.
Please let us know how are you are doing and I think you’ll find that everyone who posts here has a different story… Different journey… Different symptoms… No symptoms…
Try not to carry anybody else’s burdens. Your situation will be unique among us.
Best wishes,
Patty

@pmm thank you for reaching out and for your suggestions. Will keep informed.

Hi @laurinea, I understand what you are going through. My neuropathy started 18 months ago and diagnosed MGUS. Also found waldenstoms but my oncologist hadn't seen neuropathy this bad for WM so my neurologist ordered an Anti-MAG blood test, I was > 70000, so they put me on high dose prednisone (3 months so far). My neuropathy is improving - only below the knees now. So, it might be worth asking for this test. the more knowledge the better.

I also have night sweats as well as day sweats. When I perspire the odor is entirely different from before. It is like I have eaten a jar of garlic. This is new with no change in diet.

That isn't good, I have no specific odour with my sweats.