1. < Blood Cancers & Disorders

MGUS Symptoms: What symptoms did you experience?

Posted by scnana @scnana, Jan 29 9:20am

I had extensive bloodwork with a hematologist in December 2023 resulting in dual diagnoses in MyChart of thrombocytopenia and MGUS. Because of timing issues my follow up is scheduled for 2/27/2024. Anyone else plagued with overwhelming fatigue? For example, today I got up around 7:30am. I’ve felt like I need a nap since around 9:30. I’ve done some research about MGUS. Some information has been helpful, I think. Some is contradictory. What should my expectations be from my body?

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Mentor
Patty, Volunteer Mentor | @pmm | Apr 26 9:33pm

@omemee
You might ask about at what level your doc will be concerned. Also, what is in the plan to monitor renal health.
Just remember to breathe and try to relax. Let me know about Weds! Fingers crossed.

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omemee | @omemee | Apr 27 7:25am

Thank you so much for your kind support!!! Will let you know.

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sportedgee | @sportedgee | Apr 29 10:34am
In reply to @pmm "@sportedgee You’ve certainly had a lot to deal with medically over a short period of time...." + (show)
@pmm

@sportedgee
You’ve certainly had a lot to deal with medically over a short period of time. It’s always hard to tell if symptoms are related to MGUS or to coexisting health problems. With A prostatectomy, there are hormonal changes and 75% of the men who have had the surgery get what I relate to as hot flashes. Go figure. https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/hormone-deprivation-symptoms-men#:~:text=Up%20to%2075%25%20of%20men,as%20gabapentin%20(Gralise%2C%20Neurontin)
But we also know that night sweats can be associated with hematological cancers. So how does one know?
I’m sorry that your hematologist/oncologist is leaving. I always encourage people to find a hem/onc expert who is very experienced with multiple myeloma. There may be a local teaching hospital or cancer treatment facility close to you. That would be a good resource. I looked for someone who takes, his or her time with me and answers all my questions. I want to be on the same page in terms of being as proactive as possible with my MGUS. We don’t have cancer with MGUS, and the statistics are in our favor that we will die of something unrelated, but we do have the potential.
Where will you start your search for another treating physician?

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Patty,
My Hema/Ocologist is in a Cancer Center, so I will see someone he knows has MGUS experience; if not I live w/ 2 hrs of Johns Hopkins and will get a referral to there. I just met w/ my GP and when I told him of MGUS he made the statement "Well that's not a problem as it has no symptoms." I quickly corrected him on what the Mayo Clinic lists, as well as Johns Hopkins and he quickly took a back seat & said we will just stay w/ the normal stuff and let the Hema/Oncologist handle the rest.
I have had a Nutritionist friend advise of getting a complete hormone analysis to see what may have happened during the Prostate Cancer stage. No one really knows how long I had the cancer as I had NO symptoms. So the analysis is definitely on the plan to get it checked.
Thanks for all your help and suggestions. I am definitely trying to catch up on items that could possibly be linked to what has been going on. I will meet w/ the leaving Hema/Oncologist in 2 wks and have a list of questions to get answers before he passes me off.
Thanks again.

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1 reply
Mentor
Patty, Volunteer Mentor | @pmm | Apr 29 11:45am
In reply to @sportedgee "Patty, My Hema/Ocologist is in a Cancer Center, so I will see someone he knows has..." + (show)
@sportedgee

Patty,
My Hema/Ocologist is in a Cancer Center, so I will see someone he knows has MGUS experience; if not I live w/ 2 hrs of Johns Hopkins and will get a referral to there. I just met w/ my GP and when I told him of MGUS he made the statement "Well that's not a problem as it has no symptoms." I quickly corrected him on what the Mayo Clinic lists, as well as Johns Hopkins and he quickly took a back seat & said we will just stay w/ the normal stuff and let the Hema/Oncologist handle the rest.
I have had a Nutritionist friend advise of getting a complete hormone analysis to see what may have happened during the Prostate Cancer stage. No one really knows how long I had the cancer as I had NO symptoms. So the analysis is definitely on the plan to get it checked.
Thanks for all your help and suggestions. I am definitely trying to catch up on items that could possibly be linked to what has been going on. I will meet w/ the leaving Hema/Oncologist in 2 wks and have a list of questions to get answers before he passes me off.
Thanks again.

Jump to this post

@sportedgee
You have a strong start right out of the gate. Excellent education for your PCP. I am glad you have found such good resources.
I hope you will share your experience with the hem/onc doc.

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rlhare | @rlhare | Apr 30 8:15am

I have MGUS and experiencing symptoms of fatigue. Also, tired after being up 2 hours. This came on gradually, since being asymptomatic for almost 20 years, unfortunately an early diagnosis. First symptoms, unbalanced visual feeling in my head. My Kappa number jumped 20 points in 4 months, now sitting at 67. My other blood panels are normal range. My question, what should I expect from my oncologist at my upcoming visit? I have requested my own tests with MRI/occular focus, bone scan, early blood work review. Does one just live with almost debilitating fatigue?

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1 reply
Mentor
Patty, Volunteer Mentor | @pmm | Apr 30 10:25am

@rlhare
Welcome to Connect. Fatigue is frequently mentioned as a symptom of MGUS. I’m sorry you are experiencing this. 20 years is a long time to have had the MGUS diagnosis.
How often have you seen your Hem/Onc doctor for follow up and do you typically get blood analysis, scans, urinalysis and/or other testing routinely so that you have a recent baseline for comparison purposes?

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Apr 30 11:47am
In reply to @rlhare "I have MGUS and experiencing symptoms of fatigue. Also, tired after being up 2 hours. This..." + (show)
@rlhare

I have MGUS and experiencing symptoms of fatigue. Also, tired after being up 2 hours. This came on gradually, since being asymptomatic for almost 20 years, unfortunately an early diagnosis. First symptoms, unbalanced visual feeling in my head. My Kappa number jumped 20 points in 4 months, now sitting at 67. My other blood panels are normal range. My question, what should I expect from my oncologist at my upcoming visit? I have requested my own tests with MRI/occular focus, bone scan, early blood work review. Does one just live with almost debilitating fatigue?

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@rlhare I echo the welcome to Mayo Clinic Connect. This is a great place to ask such questions and address your concerns! As @pmm Patty asked, what has your oncologist had to say about all this? Remember to advocate for yourself, and get those tests done. Discuss with your specialist their thoughts on how best to proceed now. MGUS can change quickly, or it can lie dormant for a long time, as it seems your case has done. Our bodies are marvelous machines, and we learn to accommodate slight changes without realizing it.

As for living with fatigue, most of us will have different answers to this. I do what I can, and have had a hard time learning to forgive myself when not able to accomplish what I thought could be done. Be gentle on yourself. Do you have family and/or friends nearby to help you?
Ginger

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rlhare | @rlhare | Apr 30 4:19pm
In reply to @pmm "@rlhare Welcome to Connect. Fatigue is frequently mentioned as a symptom of MGUS. I’m sorry you..." + (show)
@pmm

@rlhare
Welcome to Connect. Fatigue is frequently mentioned as a symptom of MGUS. I’m sorry you are experiencing this. 20 years is a long time to have had the MGUS diagnosis.
How often have you seen your Hem/Onc doctor for follow up and do you typically get blood analysis, scans, urinalysis and/or other testing routinely so that you have a recent baseline for comparison purposes?

Jump to this post

I do get routine blood work done. I have had the Nurse Practitioner for last 3 visits. I also requested the bone scan, since my teeth indicated some resorption, which the dentist said followed a pattern of MM. There are a couple suspect spots on calvarium from bone scan, but not on MRI. Does an mri only scan soft tissue?

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1 reply
Mentor
Patty, Volunteer Mentor | @pmm | Apr 30 4:51pm
In reply to @rlhare "I do get routine blood work done. I have had the Nurse Practitioner for last 3..." + (show)
@rlhare

I do get routine blood work done. I have had the Nurse Practitioner for last 3 visits. I also requested the bone scan, since my teeth indicated some resorption, which the dentist said followed a pattern of MM. There are a couple suspect spots on calvarium from bone scan, but not on MRI. Does an mri only scan soft tissue?

Jump to this post

@rlhare
An MRI Picks up almost everything in the body. Bone, muscles…organs.
The only medical professional that I listen to regarding MGUS or multiple myeloma is my hematologist/oncologist. I certainly wish that professionals for whom this is not their expertise would temper their inclination to give diagnostic counsel.
We all fear that any time we feel bad, this is a possible symptom of multiple myeloma. That anxiety is the common denominator, but anxiety can also make us feel sick or sicker.
I had a couple of spots on my spine that they thought perhaps were lesions, but they turned out to be arthritis. That differentiation was made as the result of a CT scan.
It’s good that you’re advocating for yourself to get the testing that you need to reassure you or to figure out what’s going on so it can be treated.
I always try to keep in mind that the progress that has been made in treating multiple myeloma in the past decade has been phenomenal. So worst case scenario they’ll just have to fix me!
How long do you have to wait to see your Hem/Onc doc?

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1 reply
rlhare | @rlhare | Apr 30 5:03pm
In reply to @pmm "@rlhare An MRI Picks up almost everything in the body. Bone, muscles…organs. The only medical professional..." + (show)
@pmm

@rlhare
An MRI Picks up almost everything in the body. Bone, muscles…organs.
The only medical professional that I listen to regarding MGUS or multiple myeloma is my hematologist/oncologist. I certainly wish that professionals for whom this is not their expertise would temper their inclination to give diagnostic counsel.
We all fear that any time we feel bad, this is a possible symptom of multiple myeloma. That anxiety is the common denominator, but anxiety can also make us feel sick or sicker.
I had a couple of spots on my spine that they thought perhaps were lesions, but they turned out to be arthritis. That differentiation was made as the result of a CT scan.
It’s good that you’re advocating for yourself to get the testing that you need to reassure you or to figure out what’s going on so it can be treated.
I always try to keep in mind that the progress that has been made in treating multiple myeloma in the past decade has been phenomenal. So worst case scenario they’ll just have to fix me!
How long do you have to wait to see your Hem/Onc doc?

Jump to this post

Once a year, but called for appt after 4 months, since experiencing unusual symptoms
Will go end of June again and actually see the oncologist. I agree anxiety maybe part of my concern

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