← Return to MGUS Symptoms: What symptoms did you experience?

Discussion

MGUS Symptoms: What symptoms did you experience?

Blood Cancers & Disorders | Last Active: May 15 3:30pm | Replies (72)
Comment receiving replies
@beckyjochilson

Yes, hip, horrible back pain, ribs and collar bone pain. Diagnosed in 2015 with Myeloma at Emory, dropped down to Smoldering in 2020, now being told its MGUS. I'm so confused, as I'm going backwards, is that a thing? Who knows. Have had no treatment or meds, but my pain is debilitating on some days, and Dr.s act like I'm lying. All this pain is what took me to the doctor back 10 years ago !! Anyone else going through this, or is it just me?

Jump to this post

Replies to "Yes, hip, horrible back pain, ribs and collar bone pain. Diagnosed in 2015 with Myeloma at..."
Ginger, Volunteer Mentor | @gingerw | Feb 9 1:31pm

@beckyjochilson I responded to your other post, under MGUS with Bone Pain https://connect.mayoclinic.org/discussion/mgus-with-bone-pain/?pg=4#comment-1012611.

Can you keep a log/journal of your pain, showing time of day, duration, pain level, etc. to show your team? Perhaps you will see a pattern to help address it.
Ginger

VIEW AND REPLY
joyelizabeth | @joyelizabeth | Feb 9 4:30pm

I am going through the same as you and no help or care from my GP who diagnosed this

VIEW AND REPLY
junipergin | @juniperjgin | Mar 19 9:19pm

Yes.
Dealing with lame drs now as I search for a new specialist (care follow ups-no meds or treatments-screeched to a halt during covid and my hematologist retired) who seem to assume that my case is asymptomatic since MGUS means “nothing” compared to “REAL” malignancy.
It’s frustrating.
I feel as though my questions turn me into a hypochondriac in their eyes.
Humiliating appts.

I truly truly believe deep within that instinctive intuition that many of my complicated medical issues MAY be related to MGUS (even though mine is IGg kappa light chain = COMMON and considered “non significant.”
(Don’t you dislike the term MGUS? It irritates me.)

My apologies; this is more of a rant than anything very helpful.

But I think:
If the blood plasma chemistry has been altered by the abnormal proteins, WHY WOULDN’T this create problems?

We simply don’t know enough yet.
I think there is a lot remaining to be discovered and realized.

Wishing you all well with blessings across cyberspace.

VIEW AND REPLY