Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

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?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Hello,
I've noticed that my urine sometimes is a smidge more bubbly than normal, and sometimes it looks like there's lots of ... little stuff ... floating in it. Not fine enough to call it cloudy but not large either. Has anyone else had this issue? I'm worried about excess protein. My latest round of tests have my FLC amounts and ratio within normal levels but M-Spike popped up slightly to 1.3 from 1.2 six months prior. Currently on an annual testing cycle but the urine has me concerned. No other symptoms, luckily.

Just curious if this is something I should contact my doc about. Thx.

REPLY
@kk1221

Hi!
I agree with checking for an autoimmune disease. I’ve had 4 different drs, including one at Mayo diagnose me with Fibromyalgia. I definitely have the aches you’re describing. But I don’t know that it has anything to do with my MGUS.
My initial finding of MGUS was actually a polyclonal one. Meaning that instead of a monoclonal, one, I had two spikes. One slowly went down over the years & then I was diagnosed with chronic Lyme disease. Related? Not sure. But you can drive yourself crazy trying to understand this glitch we have in our blood. I threw away an entire box of research & decided to do what the drs told me….go live your life & let us take care of this.
Best advice ever! I will always wonder if my bad days, or new pains are the MGUS, but I probably won’t ever have the definitive answers I’ve searched for. Try not to let it overwhelm you, it’s just there for now.

Jump to this post

How were you and who diagnosed the chronic Lyme? I’ve been told I may have it, Lyme tests showed some positive tests but my RA DR AND PCP won’t “diagnose” bc they don’t treat it. Found out I have MGUS recently - don’t know what to do with that one either - except yearly tests. I’m interested in getting Lyme diagnosed to see what can be done bc maybe it’ll help with all I have.

REPLY
@hsminc

Your entry was most interesting to me.
I have IgG lambda MGUS.
My free light chains (both kappa and lambda) escalated to very high levels when I was exposed to COVID by our cleaning people. I was asymptomatic but clearly had a case of Covid.
My kappa went to normal within a couple of months but the lambda stayed high.

Jump to this post

I have read that FLCs rise due to infection which makes sense since you had covid. Don’t understand about why lambda would stay elevated but not kappa.
Both kappa and lambda were elevated at my MGUS diagnosis over 3 years ago but now just the lambda remains high. Just within normal range ratio.
I see a MM doc who is monitoring me and thinks it’s nothing to worry about. The M spike isn’t detectable since initial level of 0.2 g/dl in 2021.

FLCs can be high if you have kidney disease but that’s normal for me. And connected to autoimmune diseases.

I think there’s a lot of research currently about FLCs and why they are elevated etc.

REPLY
@pmm

The reason that I chose not to have a bone biopsy at this time is, I asked my hematologist/oncologist if my blood analysis was at current levels, what difference would it make in my treatment regimen? Would there be active intervention rather than “watch and wait.” He said no, it would not make any difference and we would continue to watch and wait. The bone marrow biopsy gives them diagnostic information which your physician may or may not feel is necessary. It’s worth having a discussion about how the results would change the trajectory of your mother‘s care before she is subjected to that. It is a minimal risk to her health, but I always opt to take the most conservative approach that makes sense to me and to my physician at the time.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6334115/

Jump to this post

Our haemotologist performed bone marrow aspiration and biopsy yesterday.The bone marrow aspiration i have attached hereby.Can you please explain if there is any abnormalities in this you see regarding MM

REPLY

My.mother's agr is 65.She got M band 0.4 and free light Kappa 100.Our haemotologist told to have bone marrow biopsy and aspiration.Her aspiration reports have arrived.Can anyone please explain what are the results

REPLY
@karishmagupta

Our haemotologist performed bone marrow aspiration and biopsy yesterday.The bone marrow aspiration i have attached hereby.Can you please explain if there is any abnormalities in this you see regarding MM

Jump to this post

Hello @karishmagupta, you may notice I removed the image from your post. I did so because it had personal identifying information. Mayo Clinic Connect is a public website and we want to protect our members' identities and personal information.

If you'd like to share images or reports, we recommend blurring out or removing any information that can identify you before posting an image.

REPLY
@karishmagupta

My.mother's agr is 65.She got M band 0.4 and free light Kappa 100.Our haemotologist told to have bone marrow biopsy and aspiration.Her aspiration reports have arrived.Can anyone please explain what are the results

Jump to this post

Sorry..I have cropped the details .kindly please reply to the image now Iattached hereby.Are there chances of MM?

REPLY

I have MGUS since 2019. However no one noticed in my blood work until 2024. I suggest u go to a cancer specialist/hematologist if not already. The story from my primary is "oh I have many patients with MGUS" Nothing to worry about. Even from my local cancer center. So I traveled to the Cancer hospital to get a second opinion. And the non cancer MD's stress you do not have cancer. Well I know that but isn't cancer best caught by early diagnosis. My cancer specialist has a very calming but serious recognition of MGUS. so get a second opinion from a Hematologist/oncologist and then decide. I'll stick with the cancer specialist. Occasional check in with the locals if I cant get to the distance if I need for the hematologist oncologist.

REPLY
@pmm

The reason that I chose not to have a bone biopsy at this time is, I asked my hematologist/oncologist if my blood analysis was at current levels, what difference would it make in my treatment regimen? Would there be active intervention rather than “watch and wait.” He said no, it would not make any difference and we would continue to watch and wait. The bone marrow biopsy gives them diagnostic information which your physician may or may not feel is necessary. It’s worth having a discussion about how the results would change the trajectory of your mother‘s care before she is subjected to that. It is a minimal risk to her health, but I always opt to take the most conservative approach that makes sense to me and to my physician at the time.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6334115/

Jump to this post

I also take the most conservative approach, however at the cancer hospital in my area I opted for the test. The M spike and diagnosis is not a known factor. According to the literature this is an uncommon cancer and my hematologist wanted to know exactly where we were when I went to him. It will allow them to intervene at an appropriate time if they have good benchmarks to start with. In my case the M spike has been in my blood since 2019. I read stories where people never convert, some convert in 5- 7 years etc. Best to take the recommendation of the cancer specialist. Ask for conscious sedation and you won't even fell it. No side effects and gives your oncologist valuable information to treat you specifically.

REPLY
@tesflo1

How were you and who diagnosed the chronic Lyme? I’ve been told I may have it, Lyme tests showed some positive tests but my RA DR AND PCP won’t “diagnose” bc they don’t treat it. Found out I have MGUS recently - don’t know what to do with that one either - except yearly tests. I’m interested in getting Lyme diagnosed to see what can be done bc maybe it’ll help with all I have.

Jump to this post

Definitely see a hematologist/oncologist re MGUS. Local primary may not take it as seriously, and it is interesting that all Myeloma cases are preceded by MGUS, but not all MGUS converts to Multiple Myeloma. About 1% convert or so I have read. So have it checked at least every year if not 6 months. Better safe than sorry. I did see one trial in the literature that is ongoing that is treating MGUS in the country so stay tuned with that. Recommend keeping up with the literature as the cancer breakthroughs change so rapidly it seems to me. NCI has some good literature but if u have a local medical library that is good.

REPLY
Please sign in or register to post a reply.