Diagnosed: MGUS

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
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?

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

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.