I am newly Diagnosed with MGUS.
I was in a ski accident in Dec 2022 and fractured my pelvis. It is now July and it shows no sign of healing or bone growth. I was sent to a Physician Assistant who is a "Bone Specialist" and was diagnosed by blood and 24 hour urine tests as having MGUS. I am sacred and overwhelmed. My PCP referred me to a Hematologist and I'm still awaiting a call and an appointment. My Free kappa light chain is 44.1 and ratio is 3.61. My IgM is 987.
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@alicat01 This afternoon I had an appointment with my dialysis clinic. This happens every month, and usually it is timed for the same day I see my oncologist for multiple myeloma. Since my nephrologist decided to have her dialysis clinic on Wed this month, I opted for a telephonic visit. She told me she had received an email from my oncologist, with notes/info related to my mm, and consulting her with coordinated treatment. Wow, I feel so blessed to have a great team!
We each have our own journey, but being able to share our common experiences truly let us know we are not alone.
Ginger
I have generalized anxiety and waiting for my PET scan results was very difficult.
I understand what you are going through.
Yes- felt exactly the same- the mental part has been a real challenge to be honest. Some days are better than others.
My doctor just told me I have MGUS at 61.5 years old. My mind is spinning and I am scared and confused, My mother lived to be 87 and I had planned on 90! They said online MGUS could be due to pesticide exposure, I never used pesticides in my yard or gardens because it might affect my dog's health. I am not of African descent or over 70 or a man. All my other tests are normal and my bone density test said I had the bones of a 20-year-old!
Is there a diet to follow or foods to avoid?
You are, of course, overwhelmed by being referred to an oncologist. Probably by all the medical information being thrown at you. Be sure to insist that everything be explained plainly to you, be a part of the process. MGUS often doesn't progress any further, hopefully you are one those.
Good morning, @karenkeeler Having a new diagnosis of a blood condition is very frightening. Sometimes there is no rhyme or reason as to why or how we ended up with the disease. I felt I lived my entire life trying to avoid cancer. I ate super healthy foods, didn’t have any bad vices, exercised, lived positively…never expected a blood cancer. My hematologists and transplant doctor all said I would drive myself to distraction trying to figure out the cause. There are random mutations that can take place from a stray gamma ray, or whatever. But that is in the past and now you start from this new point in your life. Knowledge is power and it gives you the ability to face any challenges head on. Many people have this condition and have full and happy lives.
Monoclonal Gammopathy of Undetermined Significance (MGUS) is a mouthful and is the name given to the finding of an abnormal protein in the blood. It can cause some issues over time but for many people it never progresses.
https://www.healthline.com/health/how-serious-is-mgus
My fellow mentor, @gingerw gave a wonderful reply to another new, frightened member recently diagnosed with MGUS, @alicat01 in this comment earlier in this same discussion group:
https://connect.mayoclinic.org/comment/899929/
There are many more conversations with members who have MGUS in varying stages. You can find those by just typing in MGUS in the search bar above. A number of discussions will be popping up for you.
There are 3 types of MGUS so it’s important to know the specific type of your disease. Some put you in little higher risk for progressing. It’s important for your doctors to test your blood regularly for any changes. Are you working with a hematologist?
Hello Karen:
My maiden name was Keeler- not very common. I live in TX but my father’s family was from east TN.
Anyway, I’m 64 and got MGUS dx very randomly from a physical- and also found out I have osteoporosis, which has now been much improved with medication. I had just turned 63 at the time, so been 2 years, everything stable so I do yearly labs. Only 1-3% a year of people with MGUS have any serious health problems so odds are greatly in favor of living a normal life.
No family history of cancer and my grandparents lived until mid-90s too!
But I completely understand your anxiety and don’t have any quick answers. This is a good source of information & support. But you can also overthink it all. Leslie
I am newly diagnosed as well by having a fluke appt. And my neurologist wanted to test more than what my primary did...sure enough MGUS 2.04. I worry...been 2 months trying to get in with a hemotologist....
I’m sorry you are having to wait for clarification- assume the best as that’s the most likely outcome!
I was diagnosed few years ago with MGUS also.
I go to a hematologist/oncologist for labs every 6 mos.
As long as my results stay as they are, I’m doing well and having no issues.
Just need to do bloodwork when they order it.