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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

EASY HELP FOR VITAMIN B12 and also for COLD SORES: at least these work for me.

My PCP recommended Trader Joe’s sublingual vitamin B-12 1000mcg. A little dark red box 3” long by 1”square contains a small plastic bottle of 100 tablets. This works so well that three of these eighth inch tablets per week is excessive. I need only one tablet under the tongue weekly for my B-12 to test normal. Please note. Do not take the similar one with two kinds of B. Choose just the sublingual B-12.

For cold sores: first stick to an alkaline diet. Avoid foods containing sugar. In the past I sometimes got cold sores if I took an imbalanced B complex vitamin. I don’t use that anymore. Now here’s an easy cure-all for cold sores. It least it works for me. From Whole Foods get a small tube dispenser the size of chapstick of HOMEOPATHIC Sulphur 30. When you feel a coldsore starting to try to push up your skin and start a little fever blister on your lip, take 3 tiny balls of Sulphur 30 under the tongue. Follow the directions on the container. That makes the little blister reverse itself and backup as though it went in reverse to become flat then normal again.

Both of these are small over-the-counter remedies which work for me. I greatly help they will work for you. Wishing you well!

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Hi I’ve just seen your post Like you I’ve always been on top of cleaning and other things But I’ve been diagnosed for few years now and I’m not sure if it’s down the MGUS or the fact I have R/A and spinal issues But I get exhausted by lunchtime if I don’t sleep I can’t function for rest of the day I also get terrible Bone pain in my legs and arms I was diagnosed with MGUS before the other issues and the pain in legs seemed to get worse after diagnosis I worry a lot because my blood markers are at 8 and I’ve been told 10 is the limit to start treatment but what treatment chemo or Radiation and what happens next I really hope you feel better soon But I would say Yes there related Debs 62 UK

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@gingerw

@dazlin Yes, I have had two bone marrow biopsies. One was in October 2017, one in October 2019 by two different doctors. In the 1st one they diagnosed the MGUS, but the fine print said it was considered low level of Non-Hodgkin's lymphoma, which the doctor said was MGUS. I had the 2nd done by a Mayo Clinic trained oncologist here in my new state. I also had a kidney biopsy done because we had to make sure my kidneys were not being affected by the multiple myeloma at this point. I had no issues with bone marrow biopsies, no complications at all. If you have questions on that I know there is another discussion that talked about bone marrow biopsies, and I can look it up tomorrow when I'm on my big computer.

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hi I was diagnosed with MGUS a few years ago and I have had zero information on it All I got told was I need bloods done every 4 months to check levels of which were high They are usually around 8 and all I know is that if they go up to 10 I need to go for further treatment but for what ????

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@debscullum62

hi I was diagnosed with MGUS a few years ago and I have had zero information on it All I got told was I need bloods done every 4 months to check levels of which were high They are usually around 8 and all I know is that if they go up to 10 I need to go for further treatment but for what ????

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@debscullum62 Welcome to Mayo Clinic Connect. How did you find us?

Here is information about MGUS from the International Myeloma Foundation: https://www.myeloma.org/what-are-mgus-smm-mm
And what Mayo Clinic has to say: https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362

It's important to note that for many of us, we get a diagnosis of MGUS while labwork is being done for other reasons. Equally important, is the fact that for the vast majority of people the MGUS does not advance to SMM [smoldering multiple myeloma]. Living your life normally and fully, minimizing stress, eating healthy, exercising moderately all will go a long way. Monitoring your health is important to make sure there is not a progression.

I hope this helps you?
Ginger

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@debscullum62

hi I was diagnosed with MGUS a few years ago and I have had zero information on it All I got told was I need bloods done every 4 months to check levels of which were high They are usually around 8 and all I know is that if they go up to 10 I need to go for further treatment but for what ????

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I’m with you, don’t get much from hematologist, just that she will do labs every 6 mos to follow my MGUS level.
That’s about all I know, right now I’m fine, and will return for labs in 6 mos.

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Hi I’ve been diagnosed for a few years now and I’ve found that if I do a full day of activity ie shopping or having grandkids The next day I’m wiped out I can’t do anything but sleep and before MGUS I never had anything like it . Xx

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Yes, same as other posts by people mentioning feeling wiped out after activity that usually otherwise wouldn’t do so. I’ve been diagnosed with MGUS since August 2021, 8% IgG Lambda, low IgA back then. Now, I’m MGRS (renal significance) because the last 8weeks I’ve had worsening kidney failure, which is now at stage 3a as of this week. I’m very tired, having changes in urine, as well as other symptoms related to chronic kidney disease (susceptible with IgG Lambda). Lots of bone pain, lots of fatigue, lots of night sweats. Paraprotein jumped up lately, so I think I’m due for another bone marrow biopsy to see if I’m SMM.

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I’m so sorry about your kidney involvement and other symptoms. Waiting for information is stressful. When do you go in for a workup?
Let us know how you are doing and if the MGUS has progressed.
Patty

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@debscullum62

Hi I’ve been diagnosed for a few years now and I’ve found that if I do a full day of activity ie shopping or having grandkids The next day I’m wiped out I can’t do anything but sleep and before MGUS I never had anything like it . Xx

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Deb I always attribute being tired to my rapidly advancing (*@#+!) age.
I guess it doesn’t occur to me that it might be related to the MGUS but it certainly might be.
Some days I have good energy and others, I suggest popcorn and Chardonnay for dinner to avoid making a cooking mess.
I’ve frequently been grateful that MGUS was diagnosed almost at the end of my career. I had planned retirement @ 70 and only had to work a few more months after diagnosis. On those days when my energy is low I catch up on my reading and even nap. In short, if I can pay attention to what my body is telling me, I can adjust my settings and feel better.
I hope you can adjust your sails and feel better too.
Hugs.

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@pmm

Deb I always attribute being tired to my rapidly advancing (*@#+!) age.
I guess it doesn’t occur to me that it might be related to the MGUS but it certainly might be.
Some days I have good energy and others, I suggest popcorn and Chardonnay for dinner to avoid making a cooking mess.
I’ve frequently been grateful that MGUS was diagnosed almost at the end of my career. I had planned retirement @ 70 and only had to work a few more months after diagnosis. On those days when my energy is low I catch up on my reading and even nap. In short, if I can pay attention to what my body is telling me, I can adjust my settings and feel better.
I hope you can adjust your sails and feel better too.
Hugs.

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@pmm…Chardonnay and popcorn for dinner? Gurl, save me a place. I’ll be right over!! 😅

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