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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.
She will see this I’m sure. You sound like you are having an emergency so if that’s the case its probably beyond the scope of this forum. If you’re in a 911 level situation don’t hesitate to call it.
@briansr, check your email for a message from me on my procedure for sending a private message. There may be others, but mine has been working. Martin
Hi @briansr, I sent your issue to tech support. It should be resolved soon. Thank you @johnwburns @predictable and @irvkay312 for stepping in to help problem solve while I was absent 🙂
Brian, if you’re able to post now, I hope you’ll share your experience of MGUS with @lisa54 and @bonniecanby
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
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1 Reaction@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
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1 ReactionI 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!
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 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
My replies are not able to be posted
I gave some details about my reasons for wanting to switch drs…unable to post??