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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I have had 4 BMB. All were done by my oncologist at the time. The first one was very uncomfortable! Then I moved 800 miles, and have a new doctor. He has done 3 BMB on me, with no sedation, no ativan, nothing. He is just the tops in my book. No pain, no issue, no discomfort. In fact, I drove 2 hours home after each one! A lot has to do with technique, and general approach to patient care, in my opinion.
Ginger
After my dr’s appointment I was surprised to see this on the SERUM SPEP report:
“ Possible M spike seen in gamma region.”
Then:
“SMALL PEAKS IN SEVERAL LANES WITH NO CLEAR MONOCLONAL PROTEIN IDENTIFIED.”
I have been diagnosed over 2 years ago with Biclonal MGUS. It has been over a year since my last labwork and dr appt so was worried what the status was.
As I mentioned in a previous post my labs were stable or improved:
No more proteinuria
Significant decrease in FLCs
Everything else back in normal range.
M spike 0.2 previously
I go back in 6 months to repeat everything and if still good I go to yearly. He even said my PCP could follow me but I plan to stay with him.
Doc said he doesn’t know what’s going on but that it’s not causing me any problems and not likely to.
Thoughts????
Could this be going away?
MGUS is a waiting game. I have IgA kappa light chain MGUS (8 years) and my M spike is at the detection limit. My kappa numbers have been creeping up over the years, but go up and down. I don't have any symptoms tied to MGUS, and get bloodwork every 6 months. If you have MGUS it doesn't go away, but the cancer risk is also 1% a year so low risk. Proteinuria is more tied to kidney issues so affected by diseases, meds, getting enough fluids.
I wonder if connected though? I don’t have anything medically going on that would cause kidney issues and was a new (brief) finding that I’m hoping is resolved. It wasn’t much, and the eGFR went from 61 to 73, which I’m feeling better about.
I’m 65 and don’t think it’s going to progress in my lifetime.
@leslie2121
Wow! I don’t know about you, but I celebrate any lab work results that move the needle in the right direction.
I think you are wise to continue to utilize your established relationship with your hematologist as sadly, MGUS is a persistent critter. But as @kayabbott wisely said, the cancer risk is low. All good news and should be reassuring to you.
Do you feel some relief from MGUS worry or does this just reaffirm your positive outlook?
Patty:
You are kind to always respond, and I recognize I could be more focused on gratitude and the positive direction things seem to be going.
Part of my persistence in researching this is hoping to be as healthy as possible for as long as I can.
I think the turmeric/curcumin supplements may be helping, and I wouldn’t have known about trying that if I hadn’t done my own research.
I also wonder ( and this is controversial!) what role the mRNA vaccine had in this. I believe in the benefits of vaccines- I even spent a few weeks volunteering to give shots for the County Medical Association during the pandemic, partly to get mine a little early. ( was an RN for my first career) I don’t think anyone was conspiring, and it ended the worst of the pandemic thankfully!
But for a few susceptible individuals it may have triggered autoimmune disorders, kidney inflammation and/or nephrotic syndrome and plasma cell dycrasias.
There are a few studies just now being released online that the public can access that suggest this. I also have a family history of autoimmune disease as well as myself.
I don’t understand what “small peaks in several lanes” means. My doctor drew the SPEP for normal, and for MGUS. It’s a distinct sharp spike that indicates a monoclonal gammopathy. I don’t have that - just several little bumps in gamma area.. He was frankly baffled and said the only way to know is to do another BMB and it wasn’t warranted.
I’ve had significant fatigue, dizziness, and frankly some depression the past 2 years which has been slowly resolving. Trying to look forward now.
I appreciate this supportive group very much and wish you the best! 🥹
@leslie2121
I admire your dedication to the examination of cause and effect in your journey. I definitely view that as positivity.
I always learn from the experience of others as we are all so different yet we walk a similar path.
Thank you for your thought of possible connections. I will definitely look for the studies.
Was there anything in particular that you can share that you believe helped to resolve that depression and dizziness?
Good question!
If from an outside source then my own body may recover with time and rest.
2. Intentional stress reduction allowed my immune system to respond.
3. Curcumin? But I think it was already getting better.
As far as the depression (and anxiety), I did seek out an excellent LCSW with the oncology team. Yay to therapy! The psychiatrist didn’t recommend meds as it was an adjustment disorder. But I wonder…
@leslie2121
Oh I’m glad to hear you found a good LCSW match. This is Social Work month. Another reason to celebrate.
Stress can be crippling. For me, it makes me feel physically weak and even nauseous. Getting a handle on that is no small feat.
Amazing how the mind and body are so intertwined!