1. < Blood Cancers & Disorders

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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Diane Grant | @dianegrant | Apr 14, 2023
In reply to @gingerw "@dianegrant Welcome to Mayo Clinic Connect. I'm glad to see you reach out to our great..." + (show)
@gingerw

@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?
Ginger

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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.

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michey | @michey | Apr 14, 2023

I have MGUS and found this worth sharing:
MMRF Patient Webinar Series – Multiple Myeloma Precursor Conditions, With Updates
https://event.webcasts.com/starthere.jsp?ei=1601785&tp_key=da70931f7b

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Mentor
Ginger, Volunteer Mentor | @gingerw | Apr 14, 2023
In reply to @dianegrant "I walk about 2 miles a day, not all at once though because it hurts too..." + (show)
@dianegrant

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.

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@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?
Ginger

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Diane Grant | @dianegrant | Apr 14, 2023

Yeah have had it checked a couple times, there is nothing there.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Apr 14, 2023
In reply to @dianegrant "Yeah have had it checked a couple times, there is nothing there." + (show)
@dianegrant

Yeah have had it checked a couple times, there is nothing there.

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@dianegrant A nerve ending, perhaps? Have you tried using a lidocaine cream or patch, or something like that, to "numb" the area, and see if that helps? Maybe massaging the area and its surroundings, rather than scratching it?
Ginger

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1 reply
Diane Grant | @dianegrant | Apr 14, 2023
In reply to @gingerw "@dianegrant A nerve ending, perhaps? Have you tried using a lidocaine cream or patch, or something..." + (show)
@gingerw

@dianegrant A nerve ending, perhaps? Have you tried using a lidocaine cream or patch, or something like that, to "numb" the area, and see if that helps? Maybe massaging the area and its surroundings, rather than scratching it?
Ginger

Jump to this post

Hadn't thought to try that

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