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.
I am newly diagnosed with MGUS. I have gotten through the testing here at Mayo. I am lucky to live in Rochester. I am still confused and wonder about some things that have been going on. I have neuropathy in my feet and have been struggling to lose weight (it keeps finding me). They dr has put me on an antidepressant for the neuropathy and an iron supplement for low iron. Wondering what other symptoms could be related. I have fatigue, joint pain, in addition.
@dianegrant Welcome to Mayo Clinic Connect. I'm glad to see you reach out to our great community! And, yeah! you are able to get care at Mayo Clinic.
I had to laugh at your comment about losing weight, but it finds you! Great sense of humor, and you will want to keep that in place while you navigate your new course. Confusion is very normal, and please rely on your medical team to educate you. If you hear something you don't understand, ask for them to repeat it, until it is clear to you. Likewise, don't do the "Dr. Google" thing, which can send you into a tailspin of false and scary/inaccurate information. We members will also be here for you, of course!
Neuropathy can be fairly common. For me, it is in my left leg/foot. I take chelated iron capsules daily and also receive darmepoetin astra shots once a month for anemia. There are comorbidities in my health situation, and everyone works together to keep me balanced, including me. Fatigue can be caused by several factors, among them just the simple addition of this new diagnosis, as you ponder what will happen/what will my future be. Are you backing off the physical exercise you were doing? That could cause fatigue and joint pin, also, so try to keep/maintain that moderate exercise.
For the vast majority, people live with MGUS for a long time without progressing or morphing into smoldering multiple myeloma. Years, decades in fact. There is no rhyme or reason why some people progress beyond the MGUS. In my case, I went from MGUS to full-blown active multiple myeloma in less than 2 years. I like to say it's because I have always been an overachiever! Truthfully, I have been dealing with autoimmune conditions since 1988, and think my body just has a tendency to overdo it all.
What questions do you have for me?
Welcome, Dianne! I don’t have much I can add to what Ginger shared. I think after I was diagnosed I was in shock for a few months. The information was hard to digest. MGUS is not cancer, but it sometimes morphs into cancer…we watch for progression and hope for good lab work every few months. I had to digest that for awhile until it became my new reality.
I have neuropathy as well which they attribute to my well-controlled type 2 diabetes. It is my greatest health challenge as it limits my enthusiasm about staying physically active. It makes it hard to lose weight. I relate! And my appetite is intact. Go figure. It also makes me a bit wobbly.
The up side to this MGUS thing is that lots of people never know they are at risk for Multiple Myeloma until they are diagnosed with it. I get excellent care from my hematologist/oncologist with quarterly, comprehensive blood analysis and whatever else seems medically necessary to monitor for progression. In the event I do get Multiple Myeloma or my MGUS progresses to smoldering, it will be treated aggressively and early.
Try stay positive. Live life! Enjoy each day. In some ways this has been eye opening for me and for that I am grateful.
Again, welcome to our group! There are some great people here.
I walk about 2 miles a day, not all at once though because it hurts too much. I also get up and move around at my desk. Is an unbearable itch a symptom? I have a spot on my back, very localized, that itches no matter what we do. I have my hubby scratch it, use a back scratcher, scrub it and even put lotion on it. There is nothing visible other than the scratch marks LOL.
I have MGUS and found this worth sharing:
MMRF Patient Webinar Series – Multiple Myeloma Precursor Conditions, With Updates
@dianegrant Has a dermatologist checked it out, yet? I have a couple of spots that that happened to, but they were little skin cancers. Not to alarm you. But, I am prone to skin cancer. Ingrown hair?