Does anyone else have MGUS?

@theadosi Thea, my last numbers were a bit higher than usual. I attribute that to surgery I had (hip replacement) on 4.1. We’ll see when I go back in March. I was diagnosed in August of 2021.
Ratio 4.53, m spike 0.02, kappa 80.7 mg/L, Lambda 17.8 last go around.
Those numbers aren’t far from what they were in 2021
No lesions or anything showing up on my scans that my physician is worried about.
I think it’s important to get bones scans annually from what I’ve read.
I often get my labs the same day as my doctors appointment. They crank results out pretty fast, but I insist on having early morning labs and then a late morning doctors appointment if I’m going to do that. Since I live only 25 miles away from my cancer center, I don’t mind going in a couple of days in advance to get the labs and that way I’m sure that the doctor will have them in his hand when I see him. Not only is that better for my anxiety, but I want to be able to ask my questions while I’m in the room. It’s so hard to get them on the phone otherwise. I write my questions down and I literally check them off as they are answered so he knows that he’s not leaving the room until I get all my questions answered. Poor guy. I was a medical social worker so I can be pretty assertive with doctors. The other thing that I think is important at least for me is to take someone with me to my appointment. So often I get so much information all at once and I have been known to forget what was said in the room. These initial appointments are so important because we’re just learning about the disease and of course we’re anxious. For me, I was anxious for the first two years and then I’d say I calmed down and didn’t feel like I was going to immediately get multiple myeloma. The other thing that helps me is that I found a doctor that works pretty well with me. He doesn’t sugarcoat anything, but he’s also not a hand ringer. And every darn time when I leave his office, he says “you’re doing fine and in the unlikely event that you get smoldering or multiple myeloma it is very treatable and we know so much more about it now than we did even a decade ago.”
That is really reassuring to me. I hope you let me know how you’re doing and if we can be helpful to you by providing some information from our own experience. We’re not doctors and anecdotal information is certainly limited by the perspective of the patient, but we also have some pretty good experience researching this blood disorder. Would you mind sharing how your journey is going?

@pmm thanks Patty! I just had my labs done on January 21st, a week ago! My m spike was .2 g/dl down from .29 on Dec 29 which was when they found the first abnormality. My ratio is .7 and my kappa is 13.77, lambda 19.41. I had a call from the nurse today who told me to keep living my life and try to forget about it. I wish!!

Although I am now a multiple myeloma patient, and on treatment for that since 2021, reading the stories here makes me wonder. Officially I was diagnosed with MGUS in 2017, progressed to SMM in 2018, and to MM in 2019. But before all of that, back even to the late 1990s, my iron was low and labs were inconclusive. Doctors said it was due to my fibroid tumors, and I had a hysterectomy in January 1999. But truly, I have been wondering if it was MGUS all that time, as there was no testing done. My insurance was an employer sponsored HMO, notorious for not looking into special testing [that might cost more money!] I had no clue about MGUS and all.

That said, it is so important for us to be our own healthcare advocates. In these times of bountiful accurate information available to us, it is imperative we educate ourselves! Not be scared, and take into account our own best healthcare interest. Yes, even when that means being a "thorn in the side" of our medical team!

Just reflecting here today, and wondering how things might have been different years ago, for me....
Ginger

@pmm thanks Patty! I just had my labs done on January 21st, a week ago! My m spike was .2 g/dl down from .29 on Dec 29 which was when they found the first abnormality. My ratio is .7 and my kappa is 13.77, lambda 19.41. I had a call from the nurse today who told me to keep living my life and try to forget about it. I wish!!

I was diagnosed with MGUS probably 8 or more years ago.The thing to do is get your bloodwork done every six- twelve months. If your numbers are worse, see your hematologist/ oncologist. If the numbers remain pretty much the same or even better, just forget to worry and enjoy your life! Good luck.

try & live your best life ever. Sit present with your diagnosis and symptoms. Rest when your body needs it, eat well & exercise as tolerated.