Does anyone else have MGUS?

@mikxtr
It appears that there are lots of causes of hypoalbuminemia, and yes, malnutrition is one of them. Sadly for me, malnutrition has more to do with quality of diet than quantity, foodie that I am.
I would want to have this conversation with your doc to rule out some of the other reasons for low albumin. It certainly is worth checking out.
What does your hematologist say?

Quick question: does anyone else have low albumin? I asked about it and was told it indicated malnutrition. my significant size indicates otherwise. so I'm thinking either my liver isn't producing enough (uh oh) or I'm losing it to rapidly (uh oh).

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!

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.

@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.

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!

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.