Does anyone else have MGUS?

@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 🤷🏻‍♀️

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

When they first found my M-spike, I immediately asked a very good local oncologist friend about recommendations for a hematologist. He was very adamant that I should go to one of the major medical centers in our area. He said that the local docs are used to dealing with less rare diseases like leukemia & anemias, but not so much with MGUS/MM. There are many subtleties to understanding how all of the numbers relate to each other and you need someone who can do that.

My biggest issue right now is my ferritin levels. I will get an iron infusion at this next visit. Beyond that, I seem to be asymptomatic.

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.