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Hi Debra @oldladydebra1 , welcome to the forum. There are many people living with MGUS here and a few who have progressed to smoldering Multiple Myeloma or Multiple Myeloma. There is a lot of information out there when you Google MGUS. How was your condition diagnosed?
I think most of us scrambled around looking for answers related to the disorder and what we could expect. The truth is that there are so many variables that my story will be different than yours. Yours will be different from the next person. Although it’s theoretically symptom free, MGUS affects different people in different ways. I have developed neuropathy in my feet for instance.
I suspect that you will get blood work done at regular intervals. I get mine every three to six months. The results take a while to learn to interpret to know what to look out for. I rely heavily on my hematologist/oncologist to interpret these for me.
The bad news is you have MGUS. The good news is that MGUS is not cancer and for most of us, the threat of it advancing to full Multiple Myeloma is small. And also good news, if it does, the treatment options are much improved over what was available previously.
Try to relax. It’s not easy, I know. Write all your questions down and insist that your doctor sit down and answer every one of them. Make sure you have a doctor who is an expert on Multiple Myeloma.
I hope you find this forum useful. There is great support here and excellent members.
Wishing you the best possible outcome. Patty
Replies to "Hi Debra @oldladydebra1 , welcome to the forum. There are many people living with MGUS here..."
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I was diagnosed as a result of routine bloodwork showing a spike in my protein levels as compared to previous protein levels. I’ve been doing research on MGUS and see that one can have this for years, even decades with no progression to cancer or Multiple Myloma . This is certainly reassuring. I have no symptoms and nothing negative has occurred with my body. At 68 years old and with a history of all elderly family members not living past the age of 75, I’ve prepared myself to more than likely pass in my 70’s however, in the hopes of living longer, I have changed my eating and drinking habits. No more Coke Zero. I drink strictly water with fresh lemon juice throughout the day. I eat oatmeal, Greek Yogart, nuts, fruits, chicken, fish and green vegetables. I exercise by dancing for 20 minutes daily. I take a multivitamin daily. I’m hoping these positive changes will keep me healthy and possibly extend my lifespan. I’m not worried about the MGUS diagnosis. I have a strong faith in the Lord and am ready when he calls me home.