Does anyone else have MGUS?
I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
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Hello, I am new to all of this. Our doctor informed me three weeks ago that I have MGUS. To give you a brief summary, I am not very confident in my doctor's diagnosis as he only stated that he believes it to be MGUS based on the biopsy results from October 30th, 2023, and my blood work done on September 30th. I asked if there should be a baseline blood panel going forward from the diagnosis date, and he replied, "Yeah, we should probably do that." The results from my recent blood work show that my WBC is elevated and that both my Kappa and Lambda free light chains have gone up since September.
KAPPA FREE LIGHT CHAINS
Nov 28, 2023
2.33mg/dLHigh
Sep 11, 2023
2.26mg/dLHigh
LAMBDA FREE LIGHT CHAINS
Nov 28, 2023
9.1mg/dLHigh
Sep 11, 2023
8.55mg/dLHigh
KAPPA/LAMBDA RATIO
0.26
Should I be concerned at this point? I won't burden you with the long list of physical issues I've had and still have that no one can explain.
Thanks Lori, the referral to a Hematologist is in the works.
Just waiting for an appointment. I'm in Canada, so it could be a while.
Hi @canadabob. This informational article from verywellhealth.com may help give you a better understanding of MGUS and why the M protein plays a significant role in this blood/bone marrow disorder.
https://www.verywellhealth.com/monoclonal-gammopathy-of-undetermined-significance-4771132Long term, a hematologist would be a more appropriate specialist for you if there is any progression of your MGUS.
A hematologist is a doctor who specializes in researching, diagnosing, treating, and preventing blood disorders. It might be time to add a new doctor to your team, what do you think?
@canadabob. M SPIKE is an abnormal protein present in blood. You can Google it for more info. I do believe there's range whether treatment or not is needed.
I'm sure your hematologist should explain more to you. Hopefully your Dr has a good background in MGUS and Myeloma.
I'm not sure what "M spike" refers to.
If it's what I think it is, mine has fluctuated between 1.4 (4 years ago) to an average of 1.7 but the last one was 2.1
I'm hoping a hematologist can make sense of this, because I don't think my neurologist is the right guy for this.
Thank you
Thank you. I will do that.
@diana59 Welcome to Mayo Clinic Connect.
Are you being followed by a hematologist oncologist? In my experience, a family practice provider simply does not have the knowledge to work with MGUS patients. I would at least check with your specialist to get their opinion, so you can consider what your decision will be.
Will you let us know what you find out, please?
Ginger
@diana59 , I would insist on some testing. Mayo NEVER prescribes anything without further testing.
It's just so strange...seems most primary drs prescribe a bandaid, no tests. Mine does the same thing, so I rarely bother to complain to him...I wait till I go to Mayo. That said, there were times I felt like toooooo many tests were being done, so I now speak up about that, necessity only. I went through ALOT!! Hope you get to the root, and then only treat accordingly.
@canadabob , that's a good ratio. Mine has fluctuated to a bit over 2.00...then dropped back down on my last test about 8 mos ago. Usually that's a good sign M spike is down too. I'm anxious to go this Thursday, just curious.