1. < Blood Cancers & Disorders

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.

Mentor
Patty, Volunteer Mentor | @pmm | Jan 11 12:09am
In reply to @beccaboo66 "I was also diagnosed with MGUS in 2019. My primary Dr referred me to a kidney..." + (show)
@beccaboo66

I was also diagnosed with MGUS in 2019. My primary Dr referred me to a kidney Dr who in turn referred me to a Hematology DR due to high protein levels in my urine. I did the whole bone marrow test full skeletal scan. I was seeing my Dr every 3-4 months now its every 6-9 months. And of course, my diabetic Dr and kidney Dr every 3-4 months. And my hematology Dr explained my results to where i understood what was going on, so grateful for him. My progression on my MGUS is very slow numbers barely rising if at that.

Jump to this post

@beccaboo66
You sound like me…so many “ist” appointments. Glad to hear there is very little progression with your MGUS.
Patty

REPLY
shannyd | @shannyd | Jan 11 9:31pm
In reply to @allstaedt57 "@mguspixi25 what a wonderfully informative and helpful post. I, we, use a Zero water filter and..." + (show)
@allstaedt57

@mguspixi25 what a wonderfully informative and helpful post. I, we, use a Zero water filter and have done so for many years. Asheville's water is pretty exceptional, but I don't drink out of the tap ever. PFAS and benzene are two of my greatest concerns. You can run, but apparently not hide from environmental contaminants. I just wish I knew what it was so I could get away from it. Can't believe it might be my house, but not sure what else Steve and I had in common. I've changed my dental floss and toothpaste as it was the only other thing I could think of. Used to use Glide which we were told was Teflon coated (PFAS) by our dentist when we lived in San Luis Obispo for two years. Going to check out the links you mentioned above. Yeah, aren't we the lucky ones with the IgA sub-type - his was a Lamda and mine is Kappa. So much to learn.

Jump to this post

Hi there, thank you for your post. Just out of curiosity, did you and Steve both get the COVID vaccine?

REPLY
Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 11 9:42pm

@beccaboo66 @mikxtr Welcome to you both, to Mayo Clinic Connect. MGUS is not a one-size-fits-all by any stretch of the imagination. Advocating for ourselves is important, no matter the health concern. As we learn to navigate our diagnosis, you will find that having a hematologist/oncologist as part of your medical team is important. It takes a specialist to help us, as a general practitioner usually does not have the details needed to monitor our case.

Feel free to ask any questions!
Ginger

REPLY
shannyd | @shannyd | Jan 11 10:11pm

I am new to this group. Hello to you all! I really appreciate reading all of your experiences and getting different points from you all. I have NOT been diagnosed with MGUS. However, I just reviewed my blood/urine results online and there were a few red flags on there; one of them being protein in my urine, which I have never had before. My white blood cell count is over and red flagged as well, and UR ALBUMIN/CREATININE RATIO was high. My doctor is supposed to call me on Tuesday to discuss my results. I am freaking out a bit. Wondering if it could be some type of blood disorder such as this one... Spike protein, isn't that what the COVID vaccine is? I could be totally wrong but curious...

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Jan 12 9:06am
In reply to @shannyd "I am new to this group. Hello to you all! I really appreciate reading all of..." + (show)
@shannyd

I am new to this group. Hello to you all! I really appreciate reading all of your experiences and getting different points from you all. I have NOT been diagnosed with MGUS. However, I just reviewed my blood/urine results online and there were a few red flags on there; one of them being protein in my urine, which I have never had before. My white blood cell count is over and red flagged as well, and UR ALBUMIN/CREATININE RATIO was high. My doctor is supposed to call me on Tuesday to discuss my results. I am freaking out a bit. Wondering if it could be some type of blood disorder such as this one... Spike protein, isn't that what the COVID vaccine is? I could be totally wrong but curious...

Jump to this post

Hi @shannyd. You mentioned that your albumin/creatine ration is high. The protein in your urine, in this case, is albumin. It’s not the same protein that is found in patients with MGUS which stands for: monoclonal gammopathy of uncertain significance.

Sometimes, plasma cells can create abnormal proteins. These abnormal proteins are called M proteins, or monoclonal proteins or M spikes. This is not the same as albumin.

It’s really challenging when you get blood results that are flagged and have no idea what they mean! Our minds take us to worst case scenario and often, to Dr Google. Right? ☺️ It this case, it will be better for you to wait until Tuesday to see what your doctor has to say. Have you had a UTI recently?

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 12 9:40am
In reply to @shannyd "I am new to this group. Hello to you all! I really appreciate reading all of..." + (show)
@shannyd

I am new to this group. Hello to you all! I really appreciate reading all of your experiences and getting different points from you all. I have NOT been diagnosed with MGUS. However, I just reviewed my blood/urine results online and there were a few red flags on there; one of them being protein in my urine, which I have never had before. My white blood cell count is over and red flagged as well, and UR ALBUMIN/CREATININE RATIO was high. My doctor is supposed to call me on Tuesday to discuss my results. I am freaking out a bit. Wondering if it could be some type of blood disorder such as this one... Spike protein, isn't that what the COVID vaccine is? I could be totally wrong but curious...

Jump to this post

@shannyd Welcome to Mayo Clinic Connect! It's very easy to get concerned when seeing results we weren't expecting. I agree with @loribmt to not go down the rabbit hole of Dr. Google. That's downright scary and can bring unwanted anxiety!

Here, sit with me at the table, a cuppa tea and a few cookies are set up for you. Let's talk about your fears and concerns. Take some time to write out what is most concerning. Come Tuesday, you'll be ready to calmly listen, and ask any questions.
Ginger

REPLY
2 replies
careysuzi | @careysuzi | Jan 12 3:48pm
In reply to @oldladydebra1 "I was just diagnosed with Monoclonal Gammathopy due to increased protein levels in bloodwork. I’ve researched..." + (show)
@oldladydebra1

I was just diagnosed with Monoclonal Gammathopy due to increased protein levels in bloodwork. I’ve researched this and am reading there is no treatment however, it can progress to blood cancer. Anyone who has or had this have it progress to cancer?

Jump to this post

I am an active 75 year old and I was diagnosed with anemia, than MGUS 6 months later and 18 months after, with Waldenstrom Macrooglobulinema (WH), a non-hodgkins lymphoma. My lab results are all over the place, high and low, but after bone marrow biopsy symptoms were definitive enough for diagnosis. I am on the watch and wait program with repeat of labs every 3 months. Mo treatment yet,

REPLY
1 reply
kbluegrass | @kbluegrass | Jan 13 5:45am
In reply to @canadabob "I was wondering, while I wait for an appointment with a hematologist, if someone could help..." + (show)
@canadabob

I was wondering, while I wait for an appointment with a hematologist, if someone could help clarify one of my test results.

I'm in Canada and maybe reporting is a bit different, but this is how it shows on my labs.

*******************************************************************************

Protein Monoclonal Band 1 : 2.1 g/L ( *Note that this is per L not dL)

Known case of IgG kappa paraproteinemia.
A band persists unchanged in gamma region. Slight background gamma
suppression.

Light chains Kappa Free: 17.5 mg/L
Light Chains Lambda Free: 10.6 mg/L
Ratio: 1.65

******************************************************************************

Thoughts?

Jump to this post

I am new and learning and know little, but I have seen it mentioned in various places that >1.5g/dL is a higher risk category. You are well under that at .2 g/dL. Your ratio seems low to me as well. I think in some cases the m-spike is not always the most important metric as well, so I'm sure they will look at a range of factors. I'm sure your hematologist will clarify things and get further tests as necessary, but hopefully they say you land in a lower risk group, with a relatively low 1% chance per year of progression. I'm waiting on a better understanding of mine, but I am 1.6g/dL, with a 5:1 Lamba ratio so I suspect I'm in the higher risk category. On my first test though I was a 1.9g/dL so I want to understand how much variability there is, how it looks over time, etc, and in the mean time I'm just using it as motivation to get in much better shape via nutrition, lifestyle, vitamins, etc.

Let me know what they say and good luck!

REPLY
shannyd | @shannyd | Jan 13 1:00pm
In reply to @gingerw "@shannyd Welcome to Mayo Clinic Connect! It's very easy to get concerned when seeing results we..." + (show)
@gingerw

@shannyd Welcome to Mayo Clinic Connect! It's very easy to get concerned when seeing results we weren't expecting. I agree with @loribmt to not go down the rabbit hole of Dr. Google. That's downright scary and can bring unwanted anxiety!

Here, sit with me at the table, a cuppa tea and a few cookies are set up for you. Let's talk about your fears and concerns. Take some time to write out what is most concerning. Come Tuesday, you'll be ready to calmly listen, and ask any questions.
Ginger

Jump to this post

Hi Ginger, thank you for your kind words. My results alarm me, and I’m trying to figure out why I feel so crappy all the time. I’ll have to just wait for my doctor to call and go from there I guess.

REPLY
shannyd | @shannyd | Jan 13 1:03pm
In reply to @loribmt "Hi @shannyd. You mentioned that your albumin/creatine ration is high. The protein in your urine, in..." + (show)
@loribmt

Hi @shannyd. You mentioned that your albumin/creatine ration is high. The protein in your urine, in this case, is albumin. It’s not the same protein that is found in patients with MGUS which stands for: monoclonal gammopathy of uncertain significance.

Sometimes, plasma cells can create abnormal proteins. These abnormal proteins are called M proteins, or monoclonal proteins or M spikes. This is not the same as albumin.

It’s really challenging when you get blood results that are flagged and have no idea what they mean! Our minds take us to worst case scenario and often, to Dr Google. Right? ☺️ It this case, it will be better for you to wait until Tuesday to see what your doctor has to say. Have you had a UTI recently?

Jump to this post

Hi Lori, that is reassuring news! Thank you. No bacteria shows in my urine. Just blood and protein. I always have blood in my urine, for past ten years. I have had my bladder and kidneys checked and they can’t explain the blood. Never had protein in my urine before though. And my white blood cell count is high.

REPLY
View MoreView Less
Please sign in or register to post a reply.