MGUS Symptoms: What symptoms did you experience?

@suppiskey2surv @sally4910
Let’s see if I can post some information in the comments that might be helpful to both of you.
MGUS it’s not cancer and hopefully it will never be cancer for any of us. It’s considered a precursor condition for multiple myeloma, but the rate of progression from MGUS to multiple myeloma is very low/slow.
There’s no easy answer to how much risk you experience as an MGUS patient because there are so many variables. Pre-existing conditions make us more vulnerable than if we are otherwise 100% healthy.
I’m one of those people who wants to take the bull by the horns and immediately begin to whack away at whatever it is that’s threatening me. I’d prefer that I didn’t have the M protein at all. Treatment is reserved, however, for those people who are the most threatened by multiple myeloma. Even those who have smoldering multiple myeloma. As I understand it, it’s the same reason they don’t want you to get antibiotics for conditions that aren’t very serious because you’ll build up a tolerance for the antibiotics.
So although it may make you anxious not to be getting treatment, it actually means that your hematologist/oncologist considers you to be at low risk.
I honestly don’t know, nor do I remember reading anything in the literature about hives in particular as a symptom of MGUS. Some people do experience peripheral neuropathy. There are some medications that may help with that. Some of our members have had some success with curcumin/turmeric and others with diet, specifically the Mediterranean diet. You might search some of these discussions in Connect and see if you find them helpful.
You are absolutely correct about getting physicians to pay attention to you. You need to make sure that you are heard and that you have physicians who are willing to hear you. Finding the right physician is a really important part of your medical journey. I also find that I have to take some responsibility in making sure that this happens. I write down all my questions before my appointments and I pull out my notebook and systematically cross them off after we have discussed them to my satisfaction. That tells my physician that I’m really serious about him hearing me, but also reminds me that his time is valuable and I have to be organized in order to have a productive appointment.
There are many members of Connect who have lived decades with MGUS that has not advanced to Multiple Myeloma. My own “numbers” advanced a bit when I had major surgery, but then settled back down as my body healed. They are now back to where they were when I was first diagnosed, over 4 years ago.
Thank you both for your posts. We all learn from one another. Let me know how it’s going for you, particularly if your dots get connected as bout MGUS and hives.
Patty

@pmm interesting that major surgery increased your level for a time. I’m facing left shoulder surgery in my future, of which I have been delaying d/t the long recovery time. For myself, my recovery, I’ve been told, will be longer b/c of my severe osteoporosis. I have a torn rotator cuff & my acromion process is substantially slanted instead of straight across in my shoulder.
Joy joy!
When the time comes for surgery I will remember your experience of increasing levels so I understand why.
My levels are low. Diagnosed 10/24, up coming bloodwork next month. Otherwise I believe I’m healthy enough for my age (68) but I admit there are times when I just feel very tired & unenthusiastic. As we are all wondering, what’s MGUS & what’s just older age. 🤷‍♀️
I am stiff in my joints when I first get up from sleeping or sitting too long but……..once I’m moving I’m fine. Pain is sometimes but not overwhelming or particularly a certain area except the shoulder.
I still work 2 days/wk but hope to decrease to 1 early next year. Love my job but it is very physical. (RN) Again, is my “discomfort” MGUS or just age & hard work all my life?
I’m continually researching whatever I can get my hands on and listing anything I feel pertinent to discussing with my PCP & hematologist.
Maybe I’m more the “pain” than my own physical pain! 🙂
J in Fla.

@pmm interesting that major surgery increased your level for a time. I’m facing left shoulder surgery in my future, of which I have been delaying d/t the long recovery time. For myself, my recovery, I’ve been told, will be longer b/c of my severe osteoporosis. I have a torn rotator cuff & my acromion process is substantially slanted instead of straight across in my shoulder.
Joy joy!
When the time comes for surgery I will remember your experience of increasing levels so I understand why.
My levels are low. Diagnosed 10/24, up coming bloodwork next month. Otherwise I believe I’m healthy enough for my age (68) but I admit there are times when I just feel very tired & unenthusiastic. As we are all wondering, what’s MGUS & what’s just older age. 🤷‍♀️
I am stiff in my joints when I first get up from sleeping or sitting too long but……..once I’m moving I’m fine. Pain is sometimes but not overwhelming or particularly a certain area except the shoulder.
I still work 2 days/wk but hope to decrease to 1 early next year. Love my job but it is very physical. (RN) Again, is my “discomfort” MGUS or just age & hard work all my life?
I’m continually researching whatever I can get my hands on and listing anything I feel pertinent to discussing with my PCP & hematologist.
Maybe I’m more the “pain” than my own physical pain! 🙂
J in Fla.

@jdm02 you hit the nail on the head when you question symptom etiology. “Normal” aging vs MGUS symptom. Diabetes vs MGUS. Who knows?
Yes, others have spoken about their numbers increasing after surgery. I am not medically trained, but I subscribe to the notion that the body/mind experience surgery -related trauma. It plays havoc with our overall health. I know that anxiety alone makes me feel ill. Sometimes it even raises my white count as my body rallies against perceived illness. Before I understood MGUS, all I heard was the risk of MGUS progressing. The low risk of progressing didn’t register. I felt so sick.
Four years later I am stronger and better prepared emotionally to weather the storms.
I suffered a fall post-surgery and have been focused on my tears in my glutes. I know I did something to my rotator cuff as well but need to get used to my new normal as far as walking goes. Then I’ll get them to look at my arm. It hurts sometimes but I can’t imagine trying to work with a serious rotator cuff injury. Yikes! Yes, you need to be fixed.
Let me know how this goes for you. Fingers crossed that your numbers won’t increase, but keep in mind that they do sometimes fluctuate for no apparent reason.

@pmm thx for the concern about the rotor while working. It’s a challenge but right now d/t circumstances beyond my control I just can’t take the recovery time off. I’m only partially retired.
6-9 months is what I was told. Probably b/c of my severe osteoporosis making my bone mending a bit slower is my guess.
I do walk around carefully & trying to to stay active but I will not take the bone meds. I’m religious with my calcium, Vit D & eat healthy. I’m always researching better bone health. My weakness is exercise. I’m working on that. Being tired (MGUS or not?) my motivation needs some discipline.
I’m in pain management but minimally at my request. So far I’m doing ok.
Any bone help besides the meds bring it!

@pmm interesting that major surgery increased your level for a time. I’m facing left shoulder surgery in my future, of which I have been delaying d/t the long recovery time. For myself, my recovery, I’ve been told, will be longer b/c of my severe osteoporosis. I have a torn rotator cuff & my acromion process is substantially slanted instead of straight across in my shoulder.
Joy joy!
When the time comes for surgery I will remember your experience of increasing levels so I understand why.
My levels are low. Diagnosed 10/24, up coming bloodwork next month. Otherwise I believe I’m healthy enough for my age (68) but I admit there are times when I just feel very tired & unenthusiastic. As we are all wondering, what’s MGUS & what’s just older age. 🤷‍♀️
I am stiff in my joints when I first get up from sleeping or sitting too long but……..once I’m moving I’m fine. Pain is sometimes but not overwhelming or particularly a certain area except the shoulder.
I still work 2 days/wk but hope to decrease to 1 early next year. Love my job but it is very physical. (RN) Again, is my “discomfort” MGUS or just age & hard work all my life?
I’m continually researching whatever I can get my hands on and listing anything I feel pertinent to discussing with my PCP & hematologist.
Maybe I’m more the “pain” than my own physical pain! 🙂
J in Fla.

Some days I have no energy. Other days seem fine. I was diagnosed due to finding peripheral neuropathy and trying to determine the cause.

@tias we do have the best state in the union. Lived in Florida all my life so I’m Flo-grown.
A few of us on the board are trying to decide if our symptoms are MGUS or just aging & there is no real answer b/c the docs tell us MGUS basically is unknown something. Frustrating & yet I’m glad it isn’t considered a cancer. So we keep showing up for our blood draws & appts. hoping and praying all is still stable. As I said, frustrating.