Does anyone else have MGUS?

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!

I am happy to hear that you have finished treatment.

I hope you recuperate from the tough treatment journey as quickly as possible.

May you enjoy a long healthy remission!

I so appreciate the sharing of your story.
It is important to know how quickly that balance in the body can change!
Paying attention to symptoms is crucial.
You have also reminded me that I must not settle for a typical oncologist treating a range of cancers in a small rural clinic. This is not going to be a comforting situation.
I will return to the research University setting or the Mayo for advice about monitoring my own health situation.
(I know there are reasons my “best” specialist and most attentive physician suggested I begin seeing a hematologist again.
Proper monitoring and oversight can become vital more quickly than we realize, even if the statistics are very low for chance of progression.

Not one of us is a statistic; we are people. And there is also never an “average” patient.
We are each unique.

Courage!
Back to self advocacy (even though this is exhausting, sometimes humiliating, and difficult.)

Thank you!

Again, wishing you well across cyberspace!

@juniperjgin egad, I hate that you lost good support. Do ask and see if there is a new social worker around. Their work usually has a different focus than the case managers. If not, darn!
Fingers crossed.

Thank you very much for the encouragement and advice!

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).

@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?

I don't have a Hematologist. I will be discussing this along with other items with my PCP in July, after my next round of tests. Or, I will if the albumin continues to decrease.

Ahhhh I apologize. I thought you have MGUS. Glad you have a follow up scheduled.

@mikxtr Attached here is some information from Cleveland Clinic, about low albumin, also called hypoalbumineria.

As a kidney disease patient, albumin for me is carefully monitored, as it indicates the level of blood plasma protein for me. I have to watch it carefully. Daily dialysis is a strain on my system, and the need for keeping good protein levels is critical. Eating a good healthy diet, that includes protein in appropriate quantities, helps.

Would you care to share what health issues you have? Low albumin can be contributed to several different health concerns, like liver or kidney issues, infections, stress, lupus, etc. You said you are of significant size, and I'm glad you are asking this question. Your primary care indicated malnutrition, but did he/she say anything else to ease your mind, like what to do now?
https://my.clevelandclinic.org/health/diseases/22529-hypoalbuminemia
Ginger