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I have MGUS
I started having health issues when I was a very young gal around 4. I was told at a plasma center when I was 18 I couldn’t donate and I should be the one on the table receiving a donation. The doctor told me to go see an oncologist and I never did. For four years I complained to my primary doctor my symptoms and she finally told me to go see a psychologist. I did as told and they told me to get a different doctor. I did. The new doctor sent me to Roger Maris Cancer Center in Fargo, ND for some tests Sept. 12th, 2012. Within two hours they told me I had MGUS and what to look for as far as symptoms. I went to the doctors every 6 weeks for the first year.(2013) Then I became extremely anemic and hormones way out of wack. Roger Maris did nothing for me. I kept calling the nurse and telling her that I was getting sicker and sicker. Nothing again done. I made an appt with Mayo. Had many tests and stayed for 4 days seeing many doctors. (2014) Now it’s 2016 and I spent 3 weeks in the hospital. I have gone from first stage plasma cells to red blood cells to problems with white cells. Always getting infections. Anyone else out there with MGUS?
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HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Oldkarl, hopefully you’ll get that A1C under control…maybe meds throwing things off?? My husband is type 2 diabetes, but dr holding off meds for now. I cook special for him, cook, cook, cook…and the poor guy ALWAYS hungry…drives me crazy LOL. Get better soon!!
@dazlin Thanks, dazzle. I think what is happening is that my systemic amyloidosis has invaded either my pancreas or the brain<->pancreas sensory-motor nerve, just as it has my heart, lungs, etc.etc. Thankfully, I cook most of my own meals, so wifey cannot be blamed. She would clobber me.
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1 Reaction@dazlin, thank you for your encouraging words to @momofthree1. Do you have any words of encouragement for momofthree?
@dazlin, I am glad you have figured out Connect a bit more, it can be confusing and a bit overwhelming at first, as most new sites and forums are. You mentioned feeling new symptoms, overall, how are you feeling? Your posts leave the impression that you are keeping a positive attitude, but new symptoms can be scary and frustrating.
I did reply to momofthree, and also went into a bit of detail, and asked if anyone experienced side effects from Actonel. There are 2 post titles on MGUS, not sure which one I responded to, but it did have momofthree, which I sent a positive reply. Waiting to hear any replies on Actonel
I had extensive back surgery in 9/21 during Covid. After my surgery I was sent to City of Hope, Medical Ongologist. I have been seeing him every 3 months for labs. I was told it was because some of my blood work was off after surgery. I assumed it was because I had 2 transfusions during surgery. I recently was able to check my documents on line. I knew my iron was low as I was put on meds. I saw a diagnosis of Monoclonal Gamopathy which I was not aware of. I have read a lot of comments and relate to them. I was also diagnosed with CKD 3 which was new. I have known of this diagnosis and am seeing a nephrologist. I now have a lot of concerns-my dad died of lymphoma. From what I’ve learned from this site I should ask for a baseline BMB at the least. I see my GP next week and I will address these concerns with her. I appreciate what I have learned already in this group and will continue to check in.
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2 ReactionsWelcome @roseyd. You will connect with many others here, including @gingerw who has history with MGUS and kidney disease. I invite you to also join the many members and discussions in the
Kidney & Bladder support group here: https://connect.mayoclinic.org/group/kidney-conditions/
Rosey, have you talked to the oncologist about the potential diagnosis of monoclonal gammopathy of undetermined significance (MGUS)?
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1 ReactionI last saw him in 10/22 and at that time I thought I was only being treated for low ferritin. He never mentioned any other results from my labs. That was why I was so surprised to see the diagnosis and am just learning about it online.
Thank you! I have not talked to my oncologist about my dx but I plan to.
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2 Reactions@roseyd As @colleenyoung mentioned, I have CKD [Chronic Kidney Disease], now Stsge 5 and am on dialysis. Diagnosed with MGUS in 2017, I am an overachiever and have progressed rapidly from MGUS to active multiple myeloma. That runs contrary to what almost everyone else experiences, as far as progression beyond MGUS. The very biggest majority of patients go ffor many years without major progression to the next stage. And as you may have read, MGUS is often found when the medical team is looking at something else!
Making sure your nephrologist, oncologist, and primary care doctors are all in communication with each other is so important! You are the hub of the wheel of care, and they are the spokes. Neither can work well without the other. Take time to write down questions about your particular case, your care plan, and how to be the best patient you can be, before your next appointments. Don't be afraid to ask questions of them!
Is there anything I answer for you? How do you plan to relax this weekend and understand that you need to be able to relax and not let these diagnosis consume your mind!
Ginger
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3 ReactionsHi i have just been diagnosed with mgus my head is spinning could some one answer a few questions i didnt think to ask at time my next blood test is june but i go on holuday in march do i need specialist insurance also do you need to inform your life insurance has anyone had this for years without it progressing thanks in advance x
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