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I have MGUS

Blood Cancers & Disorders | Last Active: Apr 14, 2023 | Replies (56)

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@dianegrant

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.

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Replies to "I am newly diagnosed with MGUS. I have gotten through the testing here at Mayo. I..."

@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