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.

Ginger, Volunteer Mentor | @gingerw | Jan 16 10:53am

In reply to @trishagirl70 "Thanks. I just had bloodwork via my primary, and everything was in normal range, so there’s..." + (show)

@trishagirl70 We sometimes get our system run down without realizing it, and remember, we just went through the holidays! There can be stressors that affect us without us knowing.

Eat well, exercise moderately, rest as you need, reduce any stress inducers, and see if you feel better? Can you do that and let me know if it makes a difference, please?
Ginger

trishagirl70 | @trishagirl70 | Jan 15 8:43pm

In reply to @gingerw "@trishagirl70 Perhaps an appointment with your primary care doctor to run the "usual" bloodwork, and rule..." + (show)

Thanks. I just had bloodwork via my primary, and everything was in normal range, so there’s no explanation for my tiredness. I just saw MGUS and was concerned. I appreciate your reply.

Ginger, Volunteer Mentor | @gingerw | Jan 14 5:01pm

In reply to @trishagirl70 "I was referred to a hematology oncologist after I had routine bloodwork last September. The only..." + (show)

@trishagirl70 Perhaps an appointment with your primary care doctor to run the "usual" bloodwork, and rule out infections, anemia, etc is in order? I know that the labs where my bloodwork is done, takes into consideration my age/gender/fasting or not.

If you haven't gone to the website for International Myeloma Foundation, yet, take a look there and it will discuss MGUS. The paraproteinuria is simply a definition of an abnormal protein being present. myeloma.org
Ginger

trishagirl70 | @trishagirl70 | Jan 14 1:13pm

In reply to @gingerw "@shannyd Welcome to Mayo Clinic Connect! It's very easy to get concerned when seeing results we..." + (show)

I was referred to a hematology oncologist after I had routine bloodwork last September. The only thing I was told about my tests was that I shouldn’t expect perfect bloodwork at age 74, and to come back for more bloodwork in a year. It wasn’t until I looked on mychart that I learned I have monoclonal paraproteinemia. I googled it, and MGUS popped up. I’ve read that there are no symptoms with MGUS, but I often feel extremely tired. I’m also fighting frequent sinus issues, and feel headachy and just blah. Is this normal?? Should I be concerned?

Ginger, Volunteer Mentor | @gingerw | Jan 13 6:23pm

In reply to @careysuzi "I am an active 75 year old and I was diagnosed with anemia, than MGUS 6..." + (show)

@careysuzi Welcome to Mayo Clinic Connect! To get more information about your new diagnosis, I recommend you go to the Blood Cancer Support group, like you have, but in the search criteria box, type in Waldenstrom You can choose discussions and read what others have to say.

Please do this, and get some great information,
Ginger

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)

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.

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)

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.

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)

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!

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)

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,

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 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

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