I have MGUS

Posted by Lisa54 @lisa54, Jul 2, 2016

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?

@momofthree1

My son age 49 has MGUS along with many other problems. He was
diagnosed five years ago. Since then his health has declined so horrible.

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Momofthree, sorry about your son. I surely hope he gets the proper treatment!

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@dazlin

I’m getting your emails, but I don’t even see my original post from yesterday..it said..new here, MGUS. Where did it go? Am I looking in the wrong place, doing something wrong. I’m on blood disorders forum.

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Thanks oldkarl, I will call the clinic

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@dazlin

I’m getting your emails, but I don’t even see my original post from yesterday..it said..new here, MGUS. Where did it go? Am I looking in the wrong place, doing something wrong. I’m on blood disorders forum.

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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!!

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@dazlin

I’m getting your emails, but I don’t even see my original post from yesterday..it said..new here, MGUS. Where did it go? Am I looking in the wrong place, doing something wrong. I’m on blood disorders forum.

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@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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@momofthree1

My son age 49 has MGUS along with many other problems. He was
diagnosed five years ago. Since then his health has declined so horrible.

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@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.

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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

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Would anyone in the Jacksonville Mayo Clinic please let me know who you like as your Oncologist?

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