Does anyone else have MGUS?

They say there is no symptoms with MGUS but I totally disagree as it was my symptoms that made them do tests for the diagnosis. I definitely believe my neuropathy is due to the MGUS

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.

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.

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.

I recently had a bone marrow aspiration to check for myeloma. I found out today that the results came back as MGUS but do not know what type or level (someone will be in contact with me within a few weeks to discuss going forward). I have been doing some research and I keep reading that there aren't any symptoms however I have quite a few symptoms (the reason they decided to do the bone marrow aspiration). I have peripheral neuropathy in arms, hands, legs and feet (really painful in my heels), pain in rib area (front and back), kidney area, elbows and knees. I also feel nauseous a good deal of the time, get some headaches, get frequent day sweats and lose balance 3/4 times a day (don't get dizzy and don't actually fall, only when I am standing still not walking). In my readings it says if you experience specifically bone pain to see your doctor as this has possibly progressed to myeloma, however I have been told I don't have myeloma. I am just wanting to hear from people regarding these sort of symptoms as I can't handle waiting a few weeks to ask my questions and would like to know from people actually going through this.

@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

Thank you for reaching out. I had the symptoms mentioned before my diagnosis which is why they did the investigations. I just get a bit confused when pretty much everything I read about MGUS says no symptoms but obviously myself and others do have symptoms.

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.

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.