I am newly Diagnosed with MGUS.

I’m so sorry that happened but it got you an early diagnosis-somewhat similarly, I fractured 2 vertebrae (compression) while skiing & discovered osteoporosis and MGUS. I’m 64 & “healthy “.
I know exactly how you are feeling. Be patient and get to someone who specializes specifically in blood disorders, specifically MGUS and multiple myeloma etc. preferably in a research or teaching hospital with an active clinical practice in that.
It’s a complex disorder & new drugs & therapies are being developed at a rapid pace. Osteoporosis co-occurs with MGUS frequently and can be treated!
I was able to start treatment for that which helped me avoid any other fractures- but no
More snow skiing unfortunately.

Do what you need to do to get adequate sleep while you wait for the appointment. Learn a bit about MGUS but try not to google stuff. I did and most of what I found was discouraging and out of date!
As a retired RN I am my own worst enemy…

Don't fixate too much on this at this point. I went to neurologist for tingling toes. He found IgM at 820 with M-Spike at 0.8. He thought multiple myeloma, which made my worried to say the least. Went to oncologist 3 weeks later and more test showed Waldenstroms (MGUS possible stepped up), a much better alternative. Have gotten 12 infusions, three bone marrow biopsies (NO BIG DEAL i.e. not painful) and a ton of other tests. In conclusion - I'll be fine. So, I wish you the best and be patient.

I'm even worse, I'm a retired Oncology Certified Nurse and jump right to the worst conclusions. I really like your advice of going to a teaching hospital and looking seeing if I qualify for a study.
Thanks.

thanks

I was diagnosed with MGUS in 2009, when it was found during some routine blood tests. Since then, I have followed up yearly with an hematologist oncologist at a teaching hospital (OSU). Just had my appointment and am doing fine. Only problem is that I now have osteopenia. Stay strong! Most cases do not advance to Multiple Myeloma.

Thanks for your support.

I’m brand new to the site- I was diagnosed a couple days ago with MGUS. I’m scared and cry most of the time. Like many, googling has been my worst enemy. I’m having a really hard time seeing past the diagnosis rather than feeling appreciation I will have a heads up to catch myeloma early. My other bloodwork looks great and testing will be every 6-12 months. Did anyone else feel this way? What suggestions are out there to stave off depression and live a normal life? I’m a 40yr old mom to 2 young boys who need me for years to come.

What you are feeling is normal! You are not alone. I would speak to your PCP about your depression. Medication and therapy can help when life seems overwhelming. Stay off google for a while as this may contribute to your depression. The people in this support group are great. Stay strong and enjoy your boys.

@alicat01 Welcome to Mayo Clinic Connect. I know from experience, that getting a diagnosis you're not expecting can be very scary.

-Do not Google your condition! There is good information, but also a lot of questionable things out there! And it does nothing to relieve your fear.

- The vast majority of us do not advance to smoldering myeloma or beyond to multiple myeloma. The odds are in your favor to stay only with MGUS.

-While it might feel impossible today, you will find that living your life as you can, focusing on what is important to you, enjoying your children and their activities/growing up, will go a long way to ease your mind. Having rechecks every 6-12 months is a good sign!

-Come back here for support! There are many of us who will be here for you, and give you a shoulder to lean on.
Ginger

Thank you @gingerw. Your messages are so encouraging.