1. < Blood Cancers & Disorders

Always run down with MGUS

Posted by dazlin @dazlin, Feb 13, 2020

Not really sure if its related, but I get super wiped out after a couple hours of chores, or just shopping, my entire body aches badly. I have so much drive, and love getting everything done, love cleaning, cooking, gardening, and simply enjoying everything in order and organized. Seems lately, more so than the last 2 years since I was diagnosed with MGUS, once I get tired doing whatever, I'll come down with cold sores by next day, usually in my nose, sometimes on my lips. I now have meds for it. Then I'm wiped out for a few days. I dont let it stop me, but I'll admit I'm uncomfortable doing my usual. Drs continue to monitor my labs, and nothing really has progressed. I'm not anemic, and most bloodwork is within normal range. My IGM'S are very low, said to be crowded out by the abnormal cells. The IGM'S are the main white blood cells to fight infection, so I'm at risk, but I never get sick, or run fever, thank God. Just ALWAYS run down. I'm disappointed, and I always feel like even a trip to see my new baby grandson about an hour and 20 minutes drive, will leave me very tired, and run down next day. I actually plan to keep my outings short. I had a bone marrow biopsy done last june...cells are 4% IGG KAPPA...no treatment at this level. Does anyone here experience anything similar to me, with MGUS, and if so, does anything help? I think I'm starting to feel bit disheartened because I'm so active and enjoy doing alot, but my body quits, how sad.

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davidmeyer1955 | @davidmeyer1955 | Apr 25 8:17am
In reply to @JustinMcClanahan "Hello @dazlin. I'd like to invite @gingerw, @gmajudy, @stuckonu, @susangs, and @canderson12 (from this conversation, https://connect.mayoclinic.org/discussion/mgus-2d464e/)..." + (show)
@JustinMcClanahan

Hello @dazlin. I'd like to invite @gingerw, @gmajudy, @stuckonu, @susangs, and @canderson12 (from this conversation, https://connect.mayoclinic.org/discussion/mgus-2d464e/) to this conversation to talk specifically about their experience, if they have any, with feeling fatigued with their diagnosis of MGUS. While it is good that you are still in a status that does not need treatment, it certainly sounds frustrating that you are experiencing increased levels of fatigue that are preventing you from doing things you enjoy. When you are feeling run down, does taking a day to recoup typically help, or does it just get you back to a still fatigued state? Any activity in particular drain you, or is it just being active in general?

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I have a lot of symptoms too with abnormal proteins and feel your pain .

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dazlin | @dazlin | 6 days ago
In reply to @davidmeyer1955 "I’m worried about my blood protein levels too because the lab work came back with abnormal..." + (show)
@davidmeyer1955

I’m worried about my blood protein levels too because the lab work came back with abnormal IGM protein levels lower than normal but not sure what it means. Other protein levels show abnormal results and no healthcare professionals will address this . I have a large cyst on one kidney ,bladder incontinence, neuropathy and other symptoms like brain fog ears ringing overactive senses of smell hearing and touch . Can’t stand a lot loud talk in a room full of people and get anxiety easily .

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@davidmeyer1955 ,
My IGM's have always been very low, way down from normal levels. Those are the white blood cells that fight infection. Mayo has never addressed it because much of my bloodwork is normal. 2 things I was told is either I don't produce enough IGM's, or they were being crowed out with the bad cells. I think in my case, I just don't make enough.

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