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Lisa54
@lisa54

Posts: 17
Joined: May 29, 2016

I have MGUS

Posted by @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?

REPLY

@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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not so well they put me on another antibiotic very strong for two weeks. can not go in sun I get sunburned within minutes. I grew a lump between my left labia and leg that was 8 inches long. The doctor cut the lump and removed half of it and let the cut stay open to drain. I bled for two weeks and hurt. My labia developed MRSA. Oh this is just never ending. One infection after the other. I am an outdoors person and since I live in Minnesota when spring and summer came I was so excited. Draw back with all the meds I am having to stay indoors. Other than that my A1C went down three points in two weeks. I believe my blood sugars went high because of this last infection. This happens whenever I get ill. Hoping all is having a good day. Lisa

@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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@lisa54 Lisa: I’m so sorry to hear of your problems. While I’m not familiar with MGUS (until I googled it just now), it sounds as if you have been through a lot in recent times. I hope that the coming days bring you some relief with the antibiotics and continued healing. Best wishes, Teresa

I was diagnosed about a year ago with MGUS, and some other health issues. I basically take labs, and bone scans, ect every 6 mos. Overall I’m very pleased with my care providers, except for one dr in oncology. I’m experiencing new symptoms and would like to see a different dr in 6 mos. I’m not sure how to request a change for an oncologist in this field since my appts are auto scheduled. Would anyone be able to direct me here…greatly appreciated!

@dazlin

I was diagnosed about a year ago with MGUS, and some other health issues. I basically take labs, and bone scans, ect every 6 mos. Overall I’m very pleased with my care providers, except for one dr in oncology. I’m experiencing new symptoms and would like to see a different dr in 6 mos. I’m not sure how to request a change for an oncologist in this field since my appts are auto scheduled. Would anyone be able to direct me here…greatly appreciated!

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Hello @dazlin. Welcome to Mayo Clinic Connect! You will notice that I merged your question into an discussion already taking place on MGUS. There seems to be really good information within this thread.

I would like to introduce you to other members diagnosed with MGUS. Please meet @bonniecanby, @billh, @lisa54 and @briansr.

To answer your question- It’s your choice to change providers if you’re unhappy with the one you have. It’s a matter of calling the appointment desk and asking to see a different oncologist. If you have further questions that I can answer for you about this- please feel free to connect with me. 🙂 I’m happy to help!

@dazlin

I was diagnosed about a year ago with MGUS, and some other health issues. I basically take labs, and bone scans, ect every 6 mos. Overall I’m very pleased with my care providers, except for one dr in oncology. I’m experiencing new symptoms and would like to see a different dr in 6 mos. I’m not sure how to request a change for an oncologist in this field since my appts are auto scheduled. Would anyone be able to direct me here…greatly appreciated!

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@dazlin Hi! MGUS is a really tough issue sometimes. It has taken me a long time to get a diagnosis, and I still wonder about it sometimes. But for your issue, to be quick about it, if one of your doctors is one you really trust and get on with, just lay it out to them. Or, as I have also done, there should be a patient advocate close by, and if you can make that person listen, they will help you. And don’t let them get off with “Oh, things will be all right.” That is the cheapest excuse there is. Or, print out your note, and mine, and Jamie’s, and take them to the advocate. Sometimes print helps. But do tell someone at the clinic, and there will be someone who helps you. oldkarl https://bit.Ly/1w7j4j8

@dazlin

I was diagnosed about a year ago with MGUS, and some other health issues. I basically take labs, and bone scans, ect every 6 mos. Overall I’m very pleased with my care providers, except for one dr in oncology. I’m experiencing new symptoms and would like to see a different dr in 6 mos. I’m not sure how to request a change for an oncologist in this field since my appts are auto scheduled. Would anyone be able to direct me here…greatly appreciated!

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My replies are not able to be posted

@dazlin

I was diagnosed about a year ago with MGUS, and some other health issues. I basically take labs, and bone scans, ect every 6 mos. Overall I’m very pleased with my care providers, except for one dr in oncology. I’m experiencing new symptoms and would like to see a different dr in 6 mos. I’m not sure how to request a change for an oncologist in this field since my appts are auto scheduled. Would anyone be able to direct me here…greatly appreciated!

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I gave some details about my reasons for wanting to switch drs…unable to post??

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.

@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..??

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

@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.

@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!

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.

@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.

@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 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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