← Return to Bone marrow biopsy and/or blood tests for MGUS

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@gweiman

I agree with Ginger, I was diagnosed with MGUS IN 2022 when trying to discover why I was anemic. Hematologist/Oncologist is following the “watch and wait” protocols. Very frustrating for someone who like to get things done and would love a more proactive approach! In 2023 had the bone biopsy and now I’ve been “upgraded” to smoldering myeloma. Just a little further along the spectrum toward full Multiple Myeloma! But still just testing every three months and watching! Investing whole plant bad diets as there seems to be some help there. But big life style change if I go that direction.
Follow Ginger’s suggestions and find a good Oncologist with experience and educate yourself, You have to be your own best advocate!

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Replies to "I agree with Ginger, I was diagnosed with MGUS IN 2022 when trying to discover why..."

Gweiman, Thanks for your advice and input. I very much appreciate it. As I mentioned before when I asked for other labs to be ran, I got shot down by the first doctor. I asked for a more definitive test to be done because I "felt" something wasn't right with my diagnosis. Trust me when I say i didn't want to be sicker than I was diagnosed to be, but I felt that the diagnosis wasn't right. That I actually was sicker than diagnosed and I was further along but my pleas fell on totally deaf ears. I learned a long time ago that I have to be my own advocate for my health because no one else is going to be. I DON'T wanna be right about this either. I had something similar happen to me back in 2004 when I was so sick by didn't know why. Was sent to many doctor's who sent me to others who sent me to others. They all looked at me like I was making it up and or I was a hypochondriac. I FINALLY stumbled across one special Immunologist, who to this day I credit with saving my life to tell me it wasn't all in my head that I was sick. All it took was a doctor that wanted to find the truth and wasn't going to give up until he found it. That's when I was diagnosed with an autoimmune disease. He didn't label me Lupus until 2005 because he was unsure if it was Lupus or MS. I presented more for Lupus so in June of 2005 I got my label. Again, please don't misunderstand me, I don't want to be more sick than I am. The diagnosis just feels "off", if that makes sense. But how do I get the doctors to listen to me without sounding like a complete whack job? Lol...