Hi @mommatracy5 Welcome to Mayo Clinic Connect. Oh gosh, anytime we get a diagnosis it’s always a time of anxiety and questions, isn’t it?
MGUS~Monoclonal gammopathy of undetermined significance (MGUS) is a condition in which an abnormal protein — known as monoclonal protein or M protein — is in your blood.
For most people it doesn’t pose a problem but it can progress into more serious diseases. We have quite a few members in our forum who have also been diagnosed with MGUS. I’m posting several links to discussions on MGUS below, along with Mayo Clinic’s webpage on MGUS.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
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- MGUS: Please, let me know I not alone https://connect.mayoclinic.org/discussion/mgus-2d464e/

- MGUS diet: Any tips on food to enjoy or prevent progression? https://connect.mayoclinic.org/discussion/mgus-bgus-diet/

I’d like to introduce you to @momsys and @dazlin who were recently diagnosed with MGUS and @pmm. These would be great people to Connect with for support. ☺️

Where you having symptoms that prompted this diagnosis or was this discovered with a routine physical? Have you had a chat with a hematologist (blood specialist) about the diagnosis going forward?

Absolutely! Happy to chat. It does seem a bit overwhelming when you are first diagnosed. This has helped a lot to chat with others.

Hi, I was diagnosed with MGUS 13 years ago. It was progressing slowly until I got Covid and the numbers increased significantly the IgA went up a 1000 points. That made me a little nervous to say the least. Then three months later the test show a decrease, holy moly it went down, a long with many other test results. This is like riding a roller coaster!

That’s the problem with the human body, it keeps changing from the moment we were born till the day we die. The same can be said about MGUS, our numbers change up and down all the time as our bodies struggled to survive. But there’s one number that tells the progression of your MGUS, that’s your M Spike. That can fluctuate up and down slightly but it will keep increasing as your cancer is developing. The number zero point Five (0.5) is the number to watch for. In December 2021, my M Spike hit 0.56, meaning my precancerous cells are progressing towards cancer. I’d be happy if it dropped below 0.5 but from the way I feel right now, I know that’ll never happen. That’s why I paid for my funeral last week.

I hope that funeral pre-payment is not necessary to utilize for a very long time. With inflation, it’s a safe bet for all of us though.
Since I was diagnosed, I have met so many people who are MGUS patients. Each has a unique story. There is so much to consider though with co morbidities, age, general overall health, etc. I rely on my hem/onc doc to keep track of all of that and to adopt a treatment plan that will produce the best possible outcome. While I ask lots of questions, I find that I feel better when I shed the anxiety and live my life fully each day. I don’t compare my numbers favorably or otherwise with those of others because there are too many variables.
That’s just what works for me.
Y’all have a great week. We have had MiMi and Papa duty for the past few days. If a two and four year old don’t exhaust you then you have admirable stamina! I’m pooped!

Thank you for your honest answer- much appreciated. I have an appointment to see my local oncologist next month and I can ask her as well. Then I see my other oncologist in November. I will continue to do my research so I can have a laundry list of questions to ask during my visit. I am part of a research study on MM through Dana Farber. I will also request another biopsy to see it I have crossed over to SMM. The last one stated I was approaching 10%, but less than and they did not give a specific percentage. I figure after (1) year, I would like to see what the #s.
Thank you again.
Mitten1

Had to check in my my doctor less than a week ago as they found d something in my blood, he then goes on to tell me I have a condition called MGUS.
He didn't explain anything that I understood and said was referring me to the heamatologis.
All I know is what I've read online. Am still learning and wonder what should I expect.

Good morning @brit1959 There are a number of members in the Mayo Connect forum who have MGUS for some time and also new members who have been recently diagnosed. I’ve requested that a moderator bring your question over to this group because I think you’ll find some very helpful and supportive friends here.

To get you started, this is a previous reply I gave to another newly diagnosed MGUS member just a few days ago… @mommatracy5
https://connect.mayoclinic.org/comment/733533/
Your next step will be to meet with a hematologist who is a blood specialist and will most likely have a few more tests run to determine if you have an issue with your blood.
Do you have any symptoms or was this something discovered in a routine physical/lab work?

That’s the problem exactly, I personally sent a text message after reading the results of a CT Scan in late June 2022. I asked my Oncologist, Neurologist and PCP the same questions. All three were involved with my treatment, blood, brain and body. All were in agreement for what was to happen next and all three knew the others were involved. Not a word out of all three of them, not an “if, and or but”. The conclusion to the CT results was simple, yes or no. I didn’t need an explanation, I already knew the answer but the three of them didn’t have the guys to tell me, so they never answered me at all.

My sister Beverly faced her death as she prepared to die and so will I. She died from a rare brain tumor “Antiplastic Astrocytoma” at the age of 39. She was my heart and soul, my confident all her life. The night before she died, I held her in my arms as we cried. She said they’re waiting for me as she pointed out the window. Who I asked, as she pointed out the window. The Angels, she said. She died 8:25 am February 10th 1989. before my mom and I could get there.

The past haunts me as my daddy died when I was just 7yo. That tragic event will unfold this Saturday August 20th, 72 years later, his death is seared into my brain. I have to stop, this is not a good place to be. That’s why 2 weeks ago I purchased my own headstone and my ashes will be buried between my mom and sister so that we can be a family again. Please don’t answer,, I’m crying, naturally.

Colleen, thanks for the link. I did a lot of reading and realized one sad fact. Like my oncologist already mentioned to me, my birth heart defect is the key to my death. It’s an enigma, it can’t be repaired without being mapped out by the special $25,000 implanted loop heart recorder. Without that information, the procedure to destroy the short circuit causing my heart attacks cannot be performed. With my Amyloidosis hanging in the balance, if they deliberately trigger Pulseless Ventricular Tachycardia to map out the short circuit, that could trigger a major fatal heart attack killing me. So I’m once again between a rock and a hard place. Unfortunately, I’ve been in that spot more than a few times. So thanks for giving me a resource to continue to read. I hope there are more posts closer than 2016 to check out.