Does anyone else have MGUS?

My own journey with MGUS started in 2014 when my neurologist recognized the ratio between proteins in bloodwork was “off” and ordered serum protein electrophoresis for me at the age of 43.

Though my IGg Mspike (κ light chain)
and bone marrow % have remained low, my numbers fluctuate a lot. Sometimes doctors have been hopeful that it will burn out and disappear. But then it will rise again, and maybe a few months later rise some more and then drop the next time we check.

They call this asymptomatic.

My intuition about my body and the myriad autoimmune symptoms/
manifestations and overall poor health, frequent difficult infections (and even with something like raging kidney infections requiring surgery did not create a rise in white blood cell counts), et cetera lead me to believe there is more happening in MY body.

I was diagnosed with vasculitis in 2022 and with IBD ulcerative colitis in 2023 (didn’t have typical symptoms; colonoscopy revealed disease.)

It is difficult to be be told or continue to read that this has “undetermined significance” and is asymptomatic when I am sick, fatigued, running fevers, aching, “crashing” after activities, and experiencing sensory neuropathy or numbness in hands, wrists, and feet, lower legs and have several autoimmune conditions.

SOMETHING insidious is going on and so far my blood work doesn’t show much beyond the MGUS and low levels of markers in several autoimmune disorder categories and that treatment with Synthroid relieved/improved
many hypothyroidism symptoms.

I wonder all the time what is really happening.

The work I was pursuing with a rheumatologist and dermatologist came to a halt with the arrival of SARS Co-V2 as “elective” appointments were kind of shut down.
Since then I lost my rheumatologist, neurologist, and hematologist with whom I had developed rapport and trust.

Starting over is difficult. So far I have not found great help in the specialist dept.

I have been reading some research regarding the effect rheumatological and autoimmune disease have on the progression of MGUS to MM or lymphoma.
(Risk statistics are increased.)

What I want to know is if there is something about MGUS that triggers the onset of these other, sometimes very debilitating, diseases.

How can a condition, MGUS, which even at a low level changes the chemistry of one’s blood, NOT affect the body? Plasma and blood health work to regulate so much of our health and functioning.

I post this not to frighten others nor to complain. It seems there is so much that is unknown. I just hope to find physicians willing to work on the puzzle pieces with me.

I wish you all good health and send virtual hugs with positive thoughts!

I was diagnosed with MGUS last summer concurrent with a thoracic vertebral compression fracture. In January I developed Polymyalgia Rheumatica (PMR). I wonder if MGUS is the chicken or the egg. How about others?

What is MM? I was diagnosed by my neurologist with peripheral neuropathy about 2 years ago and referred to a hemotologist for further tests which led to a further diagnosis of MGUS. That diagnosis led to a bone marrow test in a hospital oncology department. Which really scared me. Luckily, no cancer found. I am re-tested for MGUS every 6 months.
I really know very little about MGUS which led me here to Mayo Clinic’ Connect plus other articles that I have found.
My hemotologist has never mentioned anything about other symptoms related to MGUS, only an increasing 1% per year of developing blood cancer- terrifying in itself.I have debilitating issues with my balance, as well as numbness in feet, legs and fingers, all supposedly caused by peripheral neuropathy.
Anything you can offer up in knowledge about either PN or MGUS would be helpful. Thank you! A Canadian bewildered by these diagnoses.

What is MM? I was diagnosed by my neurologist with peripheral neuropathy about 2 years ago and referred to a hemotologist for further tests which led to a further diagnosis of MGUS. That diagnosis led to a bone marrow test in a hospital oncology department. Which really scared me. Luckily, no cancer found. I am re-tested for MGUS every 6 months.
I really know very little about MGUS which led me here to Mayo Clinic’ Connect plus other articles that I have found.
My hemotologist has never mentioned anything about other symptoms related to MGUS, only an increasing 1% per year of developing blood cancer- terrifying in itself.I have debilitating issues with my balance, as well as numbness in feet, legs and fingers, all supposedly caused by peripheral neuropathy.
Anything you can offer up in knowledge about either PN or MGUS would be helpful. Thank you! A Canadian bewildered by these diagnoses.

I am sorry, MM is shorthand for the blood cancer, Multiple Myeloma.

I too have neuropathy; I am sorry yours has become debilitating.
Mine is just beginning to progress from sensory to some motor involvement.

If these symptoms led the physician to test for MGUS,
WHY are we not discussing the possibilities of neuropathy or treating them as serious symptoms that may be related to MGUS.

Yes.
We are most often told, “don’t be comcerned; the advancement rate is just 1% per year. MGUS is non cancerous and asymptomatic.”
(But we cannot donate blood with this condition. The reason being that our faulty blood plasma with its prolific monoclonal and unnecessary antibodies COULD trigger a malignant response in an otherwise “healthy” person receiving MGUS blood. Why aren’t we talking about this?” I have many questions that I tend to “feel” in my body as much as I may think them.)

Well, don’t you have symptoms?
Are they related?

I suspect so.

Depending on your age upon diagnosis, the likelihood of the MGUS actually progressing into any type of blood cancer is slim.

However, it is best to monitor because the progression rate is not necessarily steady or very predictable in reality.

The reality is simply that MOST, almost all, with identified MGUS, will die of other causes before the MGUS has a chance to develop into official malignancy.
(Simply not enough time with those statistics.)

Those are indeed the numbers.
There is no great reason to dread every blood draw as your levels are checked.
The statistics strongly support this.

Yet, those unanswered questions some of us have about the possibility of this condition being related to others bother my brain.

I wish you well!
I am hoping you see no further progression of that neuropathy!
Take good care of yourself.
With positive thoughts from the Northwoods of MN to you up in Canada!

@juniperjgin
I lived in western South Dakota for much of my adult life and love the northern states. It is challenging to find good medical support in the rural areas, however, and winter highways are nothing to trifle with. It sounds like you’re making good progress and putting together a viable team.
In larger systems they have social work support. I am perhaps a little biased because I was a medical social worker prior to retirement, but I have great confidence in what social workers can do to make things easier for patients. I’ll give you an example…I’m on a plethora of medication’s for various problems and I wanted to start taking curcumin. I was concerned about any interaction that this may have with medication that I’m taking. So I sent a favorable curcumin study that I found to my social worker and asked her to pass it on to my PCP. Yesterday, Saturday no less, I got a call from an hospital system pharmacist who walked through the counter indications with me and suggested dosage. My physician didn’t do that… She kind of shrugged and said, “ OK if you want to try that that’s fine.”
It was the social worker who connected me with the right person.
I have asked for their help to expedite appointments, to get referrals processed in a timely manner and even to help work with the billing department to code properly, so my insurance company will be receptive.
You might consider utilizing this resource if one is available.
Thank you for your thoughtful response and I hope that you will continue to share your insights with our members.

Hi there, I was diagnosed with MGUS back in 2017 after decades of dealing with polyneuropathy that had no known cause. Like others have suggested, read up about the condition, it will really help. In my case, the MGUS transitioned to Waldenstrom's Macroglobulinemia (aka: Lymphoplasmacytic Lymphoma), an incurable blood cancer, last year. I just finished chemo and immunotherapy. The cancer was diagnosed based on a bone marrow biopsy along with other blood abnormalities such as high kappa light chains, high kappa/lambda ratio, an M spike, and other various and sundry abnormalities. The one piece of advice I can give is to get a good hematologist and get follow up bloodwork regularly. Track any symptoms you may be having, even if they don't seem important. Another thing, don't let worry take over your life. I am convinced that stress, worry, and anxiety have contributed to my health issues. All the worrying I did didn't change the outcome and just robbed me of joy.

Thank you!
This is so helpful.

I have briefly had a bit of medical social work help.
People have moved on, gone on leave, and somewhere along the way, probably during the covid years, I no longer had this assistance.

There is a medical case worker assigned to me, through my primary clinic which is small. I don’t see her very often.
So far she has tried to help me apply for alternative insurance programs, disability, and MNsure, etc.

I am not sure what I can request of her help exactly.
I should ask for a run down about those things.

I cannot imagine having that kind of ACTUAL assistance and advocacy!
That would relieve a lot of my medical burden.

Thanks again!