Diagnosed: MGUS

@sandramgus
Hi! Just checking in. Did you have your three month checkup yet? Patty

@lbhayes
How are you? Did you ever get your questions answered?

You have a busy life, and losing your mom is it's own journey.
My husband's diagnosis was at age 62 due to peripheral neuropathy in his feet. He also has degenerative disc disease in hus upper spine & 2 surgeries so far. He thought it was restored that but his primary care doc ordered the blood tests and imaging and got him referred to a heme-onc, just before Covid. Unfortunately, I didn't go to that appointment with him, not sure how it was explained and he's convinced he has cancer, period, even though his numbers remain in range of *just* MGUS.
So much of it is new and "scary" and good patient education is critical, and being receptive to patient education is also key.
Very few progress to more serious disease, and I'm a believer that a good nutritious diet (healthy carbs, proteins, veggies, fruits, less ultra processed foods) can be helpful. Right now we're at blood work every 6 months, and possibly due for imaging as the 5 yr anniversary of diagnosis is next month. The peripheral neuropathy he experiences is a tough one...no recognized treatment specific to paraproteinemia that I've found. Working on addressing the chronic pain-chronic insomnia from his other conditions, to perhaps get him less sedentary. Also slow going as he ages. The more you can do now, while relatively youthful, the better likelihood to live a relatively healthy long life.

Contact Mayo staff and have them send you a packet of Multiple Myeloma information like they sent me two and one-half years ago. Also google International Myeloma Foundation and request their quarterly magazine.

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

@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.

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.

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!

This is super helpful, thank you!

@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.