Diagnosed: MGUS

I was also diagnosed with MGUS after routine labs.
I also was told not to worry and we just need to watch it.
I get bloodwork every 6 months at a hematologist along with a body skeletal X-ray every year for tumors.
So far all my levels are same.

Thank you, this is encouraging. My next appt is in 3 months so I'm a sponge for information now. Thanks.

@sandramgus
Hello! Welcome to Mayo connect. We have quite a few members diagnosed with MGUS, myself being one of them. it seems that I tell my diagnosis story a lot so for those of you who have heard it just tune out of my post but please share yours for the new members.
Like almost everybody else, my diagnosis was because I was seeking medical guidance for something totally unrelated. I had been in an auto accident and was rear-ended so I had neck pain. my PCP ordered a CT scan and they found a dark spot on my spine at C2 among other things. That piqued the curiosity of my PCP so she ordered more tests. The bloodwork came back with a paraprotein in my blood, which got me a ticket to a hematologist/oncologist. It was a long wait before I finally got an appointment. The Hem/Onc doc ordered his own specialized testing, and verified that I had MGUS.
By then I had totally freaked myself out by reading everything I could, in my Google searches about multiple myeloma and MGUS. Dr. Google is quite fond of the worst case scenario. My anxiety was sky high and it even raised my white count. I felt sick and I just couldn’t shake a sense of doom. And to top it off, I could not get into the hematologist/oncologist of my choice.
I did finally get into see the new guy and lo and behold, he was really a good match for me. He is not overly reactive and is able to read me well enough to know when I need some reassurance. He’s on top of the literature, and has a great deal of experience, dealing with multiple myeloma and MGUS.
The good news is MGUS is not cancer.
https://www.mayoclinic.org/diseases-conditions/mgus/diagnosis-treatment/drc-20352367
Among other blessings, I get the best preventative care of anybody I know. I started out with quarterly blood draws and scans and now I see my hematologist/oncologist every six months with scans and blood draws. My “numbers” have not really moved. They have crept up a little but nothing I am concerned about. Also, I try to take good care of myself and, try to eat, sleep and live healthy. Last, but not least, I found the Mayo Connect community which gives me support, camaraderie, and cutting edge information/research from the Mayo clinic.
Can you tell me a little more about your current situation? Have you found a good hematologist/oncologist? If so, how often will you go in and what is the plan for your care?

Hi Patty, thank you so much for sharing your detailed experience. I don't take it lightly. I had to start avoiding google too, and it was just too much information to sift through.

Like everyone else, they found out I had MGUS because of something unrelated; in my case it was just my annual check up. Since I'm at the beginning of this my next appointment is in 3 months. After that I suppose my doctor will have me come every 3-6 months. I don't have a hematologist/oncologist at this point. But I'm trying to get all the information I can so that I can go into this prepared.

Ironically, my longest illness has been migraines, for over 40 years. We *just* got my migraines under control about 2 years ago. I went from having 3-5 migraines a week to 1-2 a month. This is a *huge improvement* because I work full time and I'm always running around with my kids.

Now that MGUS has been diagnosed I'm really hoping that it doesn't become multiply myeloma, because I'm tired of being in pain and tired. I can't imagine my spine and skull having pains. It's scary to me.

Thanks for writing!

@sandramgus
Well, one of the things that my hematologist/oncologist says to me every time I see him is that there have been so many gains in treatment for multiple myeloma and it is now much more treatable than it was 5-10 years ago. That’s reassuring to me. I do hope you’ll encourage your PCP to make a referral to someone who has lots of experience with multiple myeloma in the hematology/oncology specialty area. It’s like with a colonoscopy… I want somebody that has done five a day rather than five a year to be messing around in my colon!
Seriously though, it’s a very specialized area and most PCPs willingly pass us on to someone with more experience.

This is super helpful, thank you!

Just to share my experience too: I got my diagnosis almost 3 years ago at my annual physical. I’m almost 66 now and remain stable, going to yearly appointments currently.
The first year was the worst with frequent labwork, but with things staying stable I’ve relaxed a bit.
Apparently a lot of people are walking around with MGUS and never know it!

Hello, I was diagnosed one year ago. I recently had my blood draw, it is only drawn once a year. My numbers had went up a little, but the doctor did not think it was cause for concern. I’m concerned. I have hip pain that has lasted for over a year. My doctor says I need a new hip. My kidney function is down to 33, and according to my lab work I have anemia. I have type 2 diabetes, and high blood pressure. I have not had an issue with either in over two years or longer. I just don’t think yearly testing is enough. I now have a nephrologist, I can’t wait to see what he thinks about all of this. Is my numbers up because of my low kidney function, or is my kidney function low because of my numbers? I can’t shake this feeling, that I have a reason for concern.

@lbhayes
Welcome to the Mayo Clinic Connect.
It certainly a chicken or egg situation to contemplate. There is a MGRS. I suspect the renal significance is when they can connect the dots between the M paraprotein and renal decline. I will post some information about it for you. It’s not easily available to me at this moment but I can remedy that in a few minutes.
Generally speaking, the hematologist/oncologist will do a whole body scan to look for bone lesions on a regular basis. If you have questions about bone pain or you are worried about progression, I would talk to your physician and certainly not wait for a year. I don’t know about you, but I always forget my questions when I go to see my doctor. I have begun to write them down in a notebook that I carry with me when I go for my doctors appointments.
If you feel dissatisfied with your medical care, you can always get a second opinion. This is a complicated blood disorder and you’re right to ask all your questions and ensure that your physician is able to connect all the dots between your symptoms and their etiology.
I’m sure some of your questions will be answered when you see your nephrologist.
Many of us have coexisting conditions that don’t have anything to do with MGUS. But the MGUS can certainly complicate things and the connection, or lack there of, has to be ruled out.
I have learned how to advocate for my health care. I have learned to be the squeaky wheel, but not alienate my treatment team. I look at my PCP and those specialist that I see as partners with me in deciding what is right for me treatment wise. I listen to them carefully, I ask lots of questions and I do my own research if it’s something I’m concerned about.
It’s also really nice to be connected through this forum as there are many people here who have already gone down the path that I am traveling and have good practical counsel for me. I was diagnosed with MGUS only three years ago and there are people “here” who have been living with MGUS successfully for well over a decade.
I’m really glad you found us. Do you feel comfortable in calling your doctor and asking for a telehealth appointment or a phone call so you can ask all your questions? If so, would you let me know how that goes for you? I’d also like to know what your nephrologist has to say if you’re comfortable with sharing that information.

@lbhayes
Here you go.
https://www.mayoclinic.org/diseases-conditions/mgus/doctors-departments/ddc-20352369