Does anyone else have MGUS?

I was diagnosed in 2013. They found I had almost no iron stores when anyone marrow biopsy was done. I don't know that my stores are any better since then. I was not able to get iron transfusions (thanks insurance, though I head it is unpleasant) so I had to take these huge horse pills. But I couldn't take it the amount of months necessary due to it upsetting my stomach. I can't remember how far I got but I had like several bottles left after I stopped. I have never been able to get checked for my iron stores since then. I have been chronically tired for a while and lately it has been much worse so thinking maybe iron is really low. Hard to get it checked. The last time I was checked for MGUS was in 2019 and there was a little improvement. I told my doctor that I was finally ready to get checked again and he said they can do the tests and the one to check iron stores...I had labs done last week. Neither year was part of it. I messaged them in the portal and the nurse said they can use the CBC test and mine is fine. But you can have normal CBC results and have MGUS, it's not concerning generally. They didn't find anything weird originally that I recall .but it was 2013 so ..I just know it was a different test or tests. I will probably have to find a hematologist who specializes in MGUS and and iron.... so I already found some locally. Mayo Clinic would be a great option but don't want to drive that far.

@ajbonett hey there. I also have low ferritin and MGUS. My last ferritin level was 14. How did the iron infusion go? I’m looking at getting it, but am anxious to do anything with my blood right now. Thank you for any insight!

@rachelziman72 hey Rachel. Thank you for your reply! I am trying to stay positive but battling with the anxiety from uncertainty. Have you had MGUS long? Do you have any tips for dealing with the worry? Thank you 🙂

@theadosi As far as diet, I eat mostly vegetables, seafood, some chicken and limited amounts of beef or lamb. 2-4 alcoholic drinks per week.

@roosa1005 hey there! My M spike was .2 G/DL. Is yours 1.1 G/L? Or 1.1 G/DL? I haven’t had a bone marrow biopsy yet but I just got diagnosed a week ago. I’m assuming they’re waiting to see what my numbers come back as in six months to see if they go up at which point perhaps they’ll order a bone marrow biopsy? I had an MRI of my back done recently as I have some lower back issues that are unrelated and they said that my bone marrow looked good. So I guess that’s good news. My free light chain ratio is .7, what about you? I agree, it is nice to have others who understand and can help ease the worry a little bit!

@theadosi

Hi Thea (and everyone), I have IGG Lambda and was diagnosed 2 1/2 years ago. It was a random finding that I questioned regarding IGG being elevated, which the doctor said it was nothing to worry about! My IGM and IGA were in the normal range. However, I questioned why it was high and she referred me to a Hematologist/Oncologist for further investigation. All my numbers have been stable so far. My IGG has gone up a little and my FLC ratio is low. My M-Spike was 1.1 in August 2025, down from 1.3 in January 2025.
I go in tomorrow for my 6 month panel of tests, like all of us, but I have not had a BMB as of yet, and since my numbers have been basically ok, I have been opting out of having it. Also, my new Hematologist/Oncologist Professor from John Hopkins Hospital has not been pressuring me to get this done right now. There isn't any treatment for MGUS anyway, which we know, until you progress. I am sure I have had MGUS for many, many years and did not know it. If you don't mind me asking, have you ever had a BMB done? What is your FLC ratio and your M-Spike?

It is great to be able to post on this group and get feedback! You can never have enough knowledge to help make the right decisions when it comes to your health and many other things in life that we experience along our journey!

try & live your best life ever. Sit present with your diagnosis and symptoms. Rest when your body needs it, eat well & exercise as tolerated.

@ea1 thank you for your reply!! So far this is the only forum I am a part of. You’re not the first person that has said to avoid the Facebook groups so I will. Have you made any changes to your diet? Do you consume any alcohol? I’m just wondering if it will make a difference at all or am I making all these changes for nothing 🤷🏻‍♀️

@theadosi
Doing fine. Just live your life and don’t attribute any pain to MGUS progression. I continue to get blood test once a year and seeing the Hematologist. I also avoid reading and following MGUS Facebook or other groups where people complain about ills related to MGUS.

Got to wake up every morning and be happy and thankful !

@ea1
I joined The PCROWD Study Center for Early Detection and Interception of Blood Cancers
Dana-Farber Cancer Institute. http://www.pcrowd.org/