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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jeannie215 | @jeannie215 | Feb 5 8:05pm
In reply to @allstaedt57 "This is for both you @jeannie215 and @kayabbott . My story is long too and has..." + (show)
@allstaedt57

This is for both you @jeannie215 and @kayabbott . My story is long too and has been written before, but totally agree with what Patty @pmm said above. Absolutely, get an expert, have all the tests for baseline and clear diagnostics = Bone Marrow Biopsy, 24 hour urine, PET scan... I recommend a bone density scan too for monitoring for osteopenia / porosis. I'm 66, was diagnosed on 15 February 2023, have been involved with a whole food plant-based diet study out of Memorial Sloan Kettering in NYC. My last visit, one year mark of study participation will be next month on 13 March.

I too have IgA Kappa Light Chain MGUS. No M-spike. My labs have been stable over the course of this past year. I have a local, highly competent, and responsive hematologist/oncologist, I also meet with a top gun at Dana Farber in Boston, and have my study and expert Provider at MSK.

Of significance is that I came to be a lay-expert due to my dear husband's under diagnosis of MGUS when it was probably already smoldering myeloma. His supposed local expert, before I knew what I know now, did not perform the definitive diagnostics such as BMB, 24 hr urine, nor PET. He only did labs and when the IgA continued to climb he assured us all was well. He was wrong, very, very wrong. Steve died on 24 July 2022 of MM. The lame oncologist incorrectly diagnosed him with MGUS in October 2017.

That's the short story. Seek out a known expert in the field of MGUS/SM/MM; get the appropriate baseline diagnostics; advocate for yourself; learn all you can; breathe; eat well; exercise regularly; keep your weight down; have faith; vacation often. Oh, my guy at Dana Farber told me to "Keep your stress down."

You're in the right place to continue you journey. You are not alone. 🙏💜

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Hi. Thank you so much for your input. I am sorry about your husband. I read about the trial but knowing me and my lifestyle mostly having to do with work,,, I don't think I would be able to stick to it. We prob go to the same specialist at Sloan.

Do you feel that eating plant based has helped to keep your numbers stable? How are you feeling?

Thank you for your kindness and support.

Best always,
Jeannie

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1 reply
Mentor
Patty, Volunteer Mentor | @pmm | Feb 5 9:41pm
In reply to @jeannie215 "@kayabbott @allstaedt57 @pmm Hi Everyone, Thank you so much for your replies. I have an amazing..." + (show)
@jeannie215

@kayabbott @allstaedt57 @pmm

Hi Everyone,

Thank you so much for your replies. I have an amazing doctor at Sloan in Manhattan. Myeloma and plasma disorder specialist. Everyone at Sloan has been amazing. I spoke to him about everything. I did meet with a rheumatologist who does not believe that I have any auto immune conditions. I was surprised bc my mom and brother have many. He sent me for a bilateral hip xray to check for osteoarthritis. I received the results on the portal. Does not indicate OA but I don't understand the medical terminology and he hasn't called me as of yet to discuss. It says- small enthsophytes along bilateral iliac crest margins. Of course I googled the heck out of that but want to hear from the rheumatologist. He also believes that the pain in my hips could be from the increased levels of protein in my blood due to MGUS. I have to run all that by the oncologist a Sloan.. I go next month for a bone marrow biopsy, pet scan and bloodwork. I also wonder (which I guess doesn't really matter) if my MGUS is 9-11 related. I was there the day of and for 5 years after. MM is one of the most common cancers.

I also have not shared any of this with my family bc I feel that there's no point in upsetting or worrying them until I have to. What do you think?

Thank you so much,
Jeannie

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@jeannie215
It sounds as though you have a trusted medical team. It takes some time to assemble the right combination so that’s good.
The assessment of hip pain being related to M protein in the blood by your hematologist is new to me. I’d be interested in how those dots might be connected. Are all your clinicians able to share electronic medical records? It’s so helpful if they all use the same system.
9-11 exposure…I’m so sorry. Just the trauma of watching it on TV was terrifying and heartbreaking. I can’t even imagine actually being there during or after. I’m so sorry.
The bone biopsy will give your docs a lot of information and will enable a definitive diagnosis.
It’s hard to sit with all this and the anxiety. I hope you do have a close friend or family member to whom you can confide. We all need that support.
Let us know what you find out.
Hugs.
Patty

REPLY
1 reply
kayabbott | @kayabbott | Feb 6 8:44am
In reply to @jeannie215 "@kayabbott @allstaedt57 @pmm Hi Everyone, Thank you so much for your replies. I have an amazing..." + (show)
@jeannie215

@kayabbott @allstaedt57 @pmm

Hi Everyone,

Thank you so much for your replies. I have an amazing doctor at Sloan in Manhattan. Myeloma and plasma disorder specialist. Everyone at Sloan has been amazing. I spoke to him about everything. I did meet with a rheumatologist who does not believe that I have any auto immune conditions. I was surprised bc my mom and brother have many. He sent me for a bilateral hip xray to check for osteoarthritis. I received the results on the portal. Does not indicate OA but I don't understand the medical terminology and he hasn't called me as of yet to discuss. It says- small enthsophytes along bilateral iliac crest margins. Of course I googled the heck out of that but want to hear from the rheumatologist. He also believes that the pain in my hips could be from the increased levels of protein in my blood due to MGUS. I have to run all that by the oncologist a Sloan.. I go next month for a bone marrow biopsy, pet scan and bloodwork. I also wonder (which I guess doesn't really matter) if my MGUS is 9-11 related. I was there the day of and for 5 years after. MM is one of the most common cancers.

I also have not shared any of this with my family bc I feel that there's no point in upsetting or worrying them until I have to. What do you think?

Thank you so much,
Jeannie

Jump to this post

You are going through so much. Not knowing is hard. My baseline biopsy helped as well as all the other test results. Will it ever morph into MM, how will loved ones and friends react? I hope you can escape the stresses. Eight years ago I got the MGUS diagnosis months before my little brother died of pancreatic cancer. I started collecting autoimmune diseases 50 years ago (a sucky hobby). It is unfortunate to have your rheumatologist dismiss that rather than test. Pain just from M proteins seems a stretch. It would be good to get a treatment plan for the enthsophytes. I get muscle spasms associated with attachments on my left illiac crest but control that with stretching exercises from PT. Where does MGUS come from? I doubt we will ever know. What causes plasma cells to mutate? Being at ground zero was toxic partly because the pH from concrete dust was about 11, similar to breathing Drano. The airborn asbestos wasn't as problematic because the the low concentrations and it not was the nasty (Libby Montana) variety, but still bad. My coworkers flew over ground zero and sampled the air; USGS data was published online before the EPA screwup.

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mascot | @mascot | Feb 7 3:46am
In reply to @pmm "@jeannie215 It sounds as though you have a trusted medical team. It takes some time to..." + (show)
@pmm

@jeannie215
It sounds as though you have a trusted medical team. It takes some time to assemble the right combination so that’s good.
The assessment of hip pain being related to M protein in the blood by your hematologist is new to me. I’d be interested in how those dots might be connected. Are all your clinicians able to share electronic medical records? It’s so helpful if they all use the same system.
9-11 exposure…I’m so sorry. Just the trauma of watching it on TV was terrifying and heartbreaking. I can’t even imagine actually being there during or after. I’m so sorry.
The bone biopsy will give your docs a lot of information and will enable a definitive diagnosis.
It’s hard to sit with all this and the anxiety. I hope you do have a close friend or family member to whom you can confide. We all need that support.
Let us know what you find out.
Hugs.
Patty

Jump to this post

That is how my mgus was diagnosed 12 years ago, I had osteonecrosis of the hip, it got better, then the other hip etc etc

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beckyjochilson | @beckyjochilson | Feb 8 3:41pm
In reply to @jeannie215 "Hi everyone. My name is Jeannie and I am 48 years old. I was recently diagnosed..." + (show)
@jeannie215

Hi everyone. My name is Jeannie and I am 48 years old. I was recently diagnosed with MGUS. I know that the likelihood of it becoming MM is low, but it still has me nervous. I have hip pain. More prevalent at night. I’m wondering if anyone else experiences that?

Jump to this post

Yes, hip, horrible back pain, ribs and collar bone pain. Diagnosed in 2015 with Myeloma at Emory, dropped down to Smoldering in 2020, now being told its MGUS. I'm so confused, as I'm going backwards, is that a thing? Who knows. Have had no treatment or meds, but my pain is debilitating on some days, and Dr.s act like I'm lying. All this pain is what took me to the doctor back 10 years ago !! Anyone else going through this, or is it just me?

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3 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Feb 9 1:31pm
In reply to @beckyjochilson "Yes, hip, horrible back pain, ribs and collar bone pain. Diagnosed in 2015 with Myeloma at..." + (show)
@beckyjochilson

Yes, hip, horrible back pain, ribs and collar bone pain. Diagnosed in 2015 with Myeloma at Emory, dropped down to Smoldering in 2020, now being told its MGUS. I'm so confused, as I'm going backwards, is that a thing? Who knows. Have had no treatment or meds, but my pain is debilitating on some days, and Dr.s act like I'm lying. All this pain is what took me to the doctor back 10 years ago !! Anyone else going through this, or is it just me?

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@beckyjochilson I responded to your other post, under MGUS with Bone Pain https://connect.mayoclinic.org/discussion/mgus-with-bone-pain/?pg=4#comment-1012611.

Can you keep a log/journal of your pain, showing time of day, duration, pain level, etc. to show your team? Perhaps you will see a pattern to help address it.
Ginger

REPLY
1 reply
joyelizabeth | @joyelizabeth | Feb 9 4:30pm
In reply to @beckyjochilson "Yes, hip, horrible back pain, ribs and collar bone pain. Diagnosed in 2015 with Myeloma at..." + (show)
@beckyjochilson

Yes, hip, horrible back pain, ribs and collar bone pain. Diagnosed in 2015 with Myeloma at Emory, dropped down to Smoldering in 2020, now being told its MGUS. I'm so confused, as I'm going backwards, is that a thing? Who knows. Have had no treatment or meds, but my pain is debilitating on some days, and Dr.s act like I'm lying. All this pain is what took me to the doctor back 10 years ago !! Anyone else going through this, or is it just me?

Jump to this post

I am going through the same as you and no help or care from my GP who diagnosed this

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2 replies
beckyjochilson | @beckyjochilson | Feb 9 7:19pm
In reply to @gingerw "@beckyjochilson I responded to your other post, under MGUS with Bone Pain https://connect.mayoclinic.org/discussion/mgus-with-bone-pain/?pg=4#comment-1012611. Can you keep..." + (show)
@gingerw

@beckyjochilson I responded to your other post, under MGUS with Bone Pain https://connect.mayoclinic.org/discussion/mgus-with-bone-pain/?pg=4#comment-1012611.

Can you keep a log/journal of your pain, showing time of day, duration, pain level, etc. to show your team? Perhaps you will see a pattern to help address it.
Ginger

Jump to this post

Honestly, That never occurred to me, yes, I will definitely start a journal. Thank you for the suggestion.

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beckyjochilson | @beckyjochilson | Feb 9 10:19pm
In reply to @joyelizabeth "I am going through the same as you and no help or care from my GP..." + (show)
@joyelizabeth

I am going through the same as you and no help or care from my GP who diagnosed this

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I'm so sorry, the lack of validation is so hard to endure.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Feb 10 3:03pm
In reply to @joyelizabeth "I am going through the same as you and no help or care from my GP..." + (show)
@joyelizabeth

I am going through the same as you and no help or care from my GP who diagnosed this

Jump to this post

@joyelizabeth Welcome to Mayo Clinic Connect. It's never easy when we get such a diagnosis like MGUS, and can really be awkward dealing with our primary care doctor. Will they refer you to a oncologist hematologist, or does your insurance allow you to refer yourself? Are you near a large cancer center or teaching hospital? Many of us will share that our experiences show we have gone through the same thing, and having a specialist is the best best. What specific tests did your doctor run?
Ginger

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