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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: Sep 19 12:31pm | Replies (818)

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@pnpam75

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.

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Replies to "What is MM? I was diagnosed by my neurologist with peripheral neuropathy about 2 years ago..."

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!

@pnpam75 MM is shorthand for Multiple Myeloma.
MGUS is often considered a precursor to this, a pattern of MGUS to SMM [smoldering multiple myeloma] to MM. Here is a link that is from the International Myeloma Foundation, that explains the correlation of it all: https://www.myeloma.org/what-are-mgus-smm-mm

Many people are diagnosed with MGUS, and never progress beyond that. That is important to remember, as we can sometimes [heck! often times!] get ourselves very worked up emotionally and mentally, and scared to wonder what might be next. As you read or will read on the pages of Mayo Clinic Connect, everyone is different, and we all come here with our own unique health conditions and concerns. Where it all sleeves together for us, how we respond to treatments, etc. is an individual thing. The key I have found, is education and understanding my own situation, and what I can do to be proactive.

I hope this helps you?
Ginger