MGUS at young age

Hi @tnraemae, I'd like to invite some of the other members who have talked about being diagnosed with MGUS to share their experiences with you. While I cannot vouch for their age when they were diagnosed, they may have some experience and knowledge to share with you despite a potential age difference in diagnosis. @anniemaggie, @gingerw, @mari, and @susangs have all discussed MGUS here on Connect recently in the following discussions:

Groups > Blood Cancers & Disorders > MGUS
- https://connect.mayoclinic.org/discussion/mgus-2d464e/
Groups > Blood Cancers & Disorders > MGUS & Osteoporosis
- https://connect.mayoclinic.org/discussion/mgus-and-osteoporosis/

@tnraemae, If you are comfortable sharing, once your provider detected the M-protein, what was his or her suggestion moving forward as far as management or monitoring?

I was diagnosed in 2012 with MGUS. At that time I did have any treatments but I was monitored every 3 mo. with blood testing. In Oct 2018 it had gone into multiple myeloma and it’s fortunate because of my frequent monitoring that I did not have any issues or symptoms from it. My treatments with chemo started in November and I am scheduled for SCT in August.

Thank you for your reply! The hematologist recommended watchful waiting and that I have all the lab work repeated every few months. He was very surprised that it was detected at my age and not in the serum. Honestly, he really didn’t seem like he knew what to do with me.
I forgot to include in the original post: the protein detected was IgM kappa and was detected during immunofixation but not during electrophoresis.

Hello @tnraemae I'm so sorry to hear of your diagnosis at this age. I'm also 36 going through my own blood disorders and I'm sort of getting the same feedback of just watchful waiting. I did the electrophoresis and the light chain kappa test. The electrophoresis only detected the polyclonal gamma globins for me, so no M spike (same with the light chain kappa test). I hope your Doctor continues to give you good care and doesn't ignore any of your concerns. Sending you positive thoughts.

I have MGUS...mine shows slightly in bloodwork with a small M spike. I read sometimes if the cell is small, it'll pass into urine, and not be detected in the blood. I have not had a urine(Bence Jones) test, but mine shows Igg kappa in blood. I also have very low IGM, which are white cells that fight infection. My oncologist has me scheduled for a bone marrow test this Friday, June 14th, YIKES!! Trying not to scared!! I'm a patient at Florida Mayo clinic, so I'm in the best hands. Also, my dr has moved up my appointments to every 3 months. Now we'll see what bone marrow tells...UGHHH!

Sending you positive energy and thoughts @dazlin

@dazlin Checking in with you to see how your bone marrow biopsy went, and the results, if you care to share? How are you feeling these days?
Ginger

@tnraemae How are you feeling recently? Are you satisfied with how your doctor is treating you? Has your doctor been able to give you any insight as to why you may have shown this condition at an early age?
Ginger

Hello,

I was just diagnosed with MGUS. I am 42 yr old white woman.
Weight loss 30 lbs
Skin rashes
Itchy skin
Soaked sweating at night
Enlarged tongue
Very fatigue
Neuropathy
Bad hip and back pain
Blurred vision
Ringing in ears
High heart rate when doing nothing
Dizzy
Bouts of diarrhea and constipation
Kappa/lambs ratio 10.5 (high)
Bence Jones in urine
M-spike 2
Bone marrow showed 5% plasma cells
IGA 953 (normal under 425)

Docs thought it was Amyloidois but they can’t see any in my fat aspirate or bone marrow.
I can’t live like this and believe there is more my doctors can do. Want my life back.
I was a fitness freak for years then over the last year all this started happening.

Thank you! 🙏

Olivia, because I did not like the first hematologist I saw, I invested in a health vacation at Mayo Clinic. It was very worthwhile and I can recommend that to everyone in this forum.

I have IgM Kappa MGUS, diagnosed in serum eight years ago, normal ratio. After trying three other hematologists I finally found one I like. So keep looking, if you can. He still has not ordered a urine test, nor suggested a bone marrow test was necessary. I see him every three months, and contribute every six months to the PCROWD study at Dana Farber Cancer Institute which sends FedEx kits for the purpose. May I suggest contacting them so that you, too, can contribute to the knowledge of this diagnosis.