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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Wow I am so sorry that no medical professional had the MGUS discussion with you. That is inexcusable.
For me, having a HEM/ONC doc whom I can trust is essential. I hope you have found one and that he or she is a good communicator. Personally, I have no patience hearing how the watch is made, I just want to know what time it is. I don’t want to feel like I have to research every aspect of this disease and treatment thereof. I want to be able to trust my medical professionals.
The amount of knowledge floating around among the posts is awesome!
Ginger -thank you for your response. I am sorry to hear of your progression I am still a bit overwhelmed by the info I’m reading but your post and advice on taking charge of my care has helped so much. It’s a comfort to have found this site and others like you who are willing to share.
You do not have cancer. MGUS is not cancer. Now if it progresses that’s a different thing. Unless you’re filling out an application for life insurance, you do not need to include that information. It’s really none of their business. Life insurance does not exclude. MGUS or even cancer.
When I was first diagnosed, I was very anxious, but over a year later, it’s not something that I even think about too much. I go to the doctor every three months for blood draws, and consultation. Other than that, I’m not impacted on a daily basis.
I’m so sorry that you have the worry of a MGUS diagnosis but in the unlikely event it progresses, multiple myeloma is treatable.
Stay away from Dr Google. He is such a downer.
Find a really good hematologist/oncologist.
Get your blood draws regularly and talk to your doc about the results then live your life.
I was diagnosed with MGUS in 2014. It remained latent until about 18 months back and two markers, Free Kappa light chain and igM , have escalated. I don't meet the criteria of multiple myeloma and thus no treatment is planned. My situation has been complicated by chronic leukemia and acute promyelocytic leukemia along the way so I have not focused too extensively on the MGUS. I understand you are probably overwhelmed now. I would suggest trying to get in front of a lymphoma oncologist . From what I read, MGUS can remain latent for years but nothing is more assuring than good numbers from semiannual blood tests. Try to educate yourself thru Mayo Connect, Leukemia and Lymphoma Society(www.lls.org). Best of luck.