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?

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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

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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Ok, I see I'm merged here in another discussion. Thanks for the replies jamienolson, and oldkarl. I'm contemplating calling scheduling for a new oncologist, but I'll also need bloodwork, which is ordered by my onc nurse...so, not sure how that will work..??

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I'll mention I'm a patient at Mayo clinic in Jax...very pleased with the care..except for this one dr.

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@dazlin

I'll mention I'm a patient at Mayo clinic in Jax...very pleased with the care..except for this one dr.

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Hi @dazlin
Your original post can be found above Jamie's response to you. See it here: https://connect.mayoclinic.org/discussion/i-have-mgus/?pg=2#comment-86767 Your replies are also getting posted. If you are reading the replies from others, like this one, in an email, please click VIEW & REPLY and then scroll through the discussion to see all the posts.

With respect to your question about switching oncologists, it is your right to request a different oncologist. You can call the appointment desk in JAX 904-953-0853 and discuss this with them.

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@dazlin

I'll mention I'm a patient at Mayo clinic in Jax...very pleased with the care..except for this one dr.

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Thank you colleenyoung...i guess I couldn't find it since it got merged with posts from 2016...im glad I looked that far back. Again..thank you for the info, and reply!

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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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@bonniecanby

jHi there. I have been away from this group for awhile. My MGUS numbers have remained stable. My hematologist and I credit it to the 6 grams of curcumin that I take everyday. I also have a-fib, osteoarthritis and osteoporosis. In the ast 3 months I have fallen twice causing compression fractures. They have been fixed. Now I am scheduled for a knee replacement because that knee has been causing my falls. My anemia is under controll with b-complex injections. Is everything connected I don't know but I hope this is the last surgery that I will ever need. Anyone that messages me I will respond..

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I do hope you are doing better. My son was told five years ago that he has MGUS, it has been a study decline with many health issues since. He sees so many doctors that it makes my head spend. God Bless you.

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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.

Jump to this post

@dazlin Most importantly, Call the clinic and find out. If you don't call, you will never know. Learning comes in strange ways. After 30 years fighting diabetes, I learned yesterday that my A1C is too low, and the doc is concerned about hypo.

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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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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.

Jump to this post

Thanks oldkarl, I will call the clinic

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