Does anyone else have MGUS?

@silversun welcome to the blood cancer and disorders group. I'm glad you found us.
I have so many questions. Were they monitoring you for something else and just recently discovered the MGUS or how did it happen that you were monitored for so long and they didn't know about this?
Are you being monitored by a hematologist/oncologist? What if you been told about MGUS? Has this been adequately explained and do you have questions that some of our members can answer?

I have had unexplained blood abnormalities including regular high WBC, and autoimmune disorders for decades without any real pattern or issues. One night in 2017 I was sent to the ER for what was found to be high blood counts in most of the CBC.

I was sent to oncology and was then diagnosed with an unspecified MPN. I had a BMB and some plasma cells on the cyto flow looked abnormal but it was labeled “undetermined significance.” The MPN dx was removed and I was continued to be followed. Iron infusions were on the regular and I was also diagnosed with a specific mitochondrial disorder. A
Spinal tap was performed and the results matched my blood. High wbc and neutrophils.

I moved to 6 month monitoring. She added in regular M protein testing. All was well until this last Monday. It was picked up in two tests and the trending changes qualified the upgraded diagnosis. My b12 tanked and that’s why I called to move up my apt. It’s only been 4.5 months since my numbers were stable.

I expected it. And the hematologist/oncologist I think did too.

And thank you for the welcome.

@silversun egad! What twists and turns you have endured on your path. I see what you mean when you say that knowing about your MGUS diagnosis is somewhat of a good thing.
Most MGUS patients are diagnosed when their physicians are in hot pursuit of something else.
I was talking myself down from panic when I was diagnosed about 3.5 years ago. This forum helped me as we have members who have had no progression of their MGUS for decades. It allowed me to calm my fears and remember that each day should be savored.
I also believe that I get the best medical care possible with my regular bloodwork and scans. It would be hard for something else to slip by my eagle-eye oncologist/hematologist and his radiologist sidekick completely. I fell like I am in good hands.
So when you go back in 4 1/2 months what is the strategy?

I have once a month b12 injections set up and repeat bloodwork and apt in July. Ordering normal cbc/iron panel. We are approaching it as: if my cbc is stable and the flc tests stay within normal ranges we will just keep monitoring. We are repeating the M tests every 6 months now.

If anything strays then we will react.

Since I have the mitochondrial and autoimmune disorders too the other dr runs his own extra tests and by now I feel like I am an honorary expert of my symptoms. I take lots of steroids here and there and have researched many mab’s so I feel like I will know when it’s time to advance my options.

7 years ago was my panic. I grieved and accepted what seemed to be the future. And although I know it is unpredictable, I am prepared to explore the options as they become available.

Since I had the BMB so early on we will repeat that IF my numbers become abnormal.

Oddly, I do indeed feel like I am better off now than I was in the beginning. I have specific areas of relevancy to focus on instead of unanswered questions; that is the comfort that I feel. I’ll take it!

I also look forward to guiding myself from what I can learn from other’s lived experiences.

@silversun I don't know how it feels to you dealing with all that but let me tell you from the perspective of just reading about your reaction, I admire how you're handling it.
Thanks so much for getting back to me.

Maintaining that image has been my strength. But it’s an image.

I have two minor children and although they have been on this journey with me from the beginning and tgey are versed in the specifics, I try to shield them from the emotional rollercoaster I am on.

Yesterday was not good. My therapist called out sick so my much needed conversation has been postponed. I admit I spent most of the day while alone crying. The reality comes in waves.

A giant shift has taken place in my future outlook, and although I didn’t ask for this I have no choice but to manage what is in front of me.

@silversun
I hope your therapist is able to reschedule with you soon. Until then do you have a trusted friend or family member you can talk to? I know we try to shield the people we love from our despair and heartache but we need to lift one another up and someday it will be their turn for you to lift them up.
it probably feels as though spending the day crying doesn't show strength but it's important that we allow some release of those emotions that are penned up inside of us. One can't deal with one frustration after another without an emotional response. There's nothing wrong with that. There's nothing wrong with being afraid.
Therapists get sick and their cars break down and they have their own mental health crisis occasionally too because they are human just like everybody else. So find yourself a Plan B person with whom you can talk. You may not be as open or self disclosing but that's OK. You will find some relief having someone close to you who listens and is supportive.
Children are intuitive and there's no hiding when we feel like the world is closing in on us. It's OK to say to kids that we need a sick and tired day or however you want to phrase it but a day where things aren't going well and you feel sad. It's scary for them when things get weird and they don't know what to do. You're not expected to be super parent and cheerful all the time. We all just do the best we can.
I don't know your therapist situation but many therapists who work in a practice with multiple clinicians have somebody who's on call for them and if you need that I would pursue that as an option.
I hope tomorrow is a better day. Big hugs. Will you let me know how you are then?

Thankfully I see my therapist twice a week regularly and have an apt this afternoon.

Today is a better day.

@silversun
I'm so glad. Look how resilient you are. give yourself the credit that you deserve. You made it through that crisis like a pro.