1. < Blood Cancers & Disorders

Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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diana59 | @diana59 | Nov 26, 2023

I was diagnosed withMGUS in 2022. I saw a hemologist who resured me to follow it. If i get bone pain to be seen. I went to my Family Practice doc. who diagnosed my hip pain as bursitis. Three weeks later I still have hip pain, have developed knee pain. Maybe because Im not walking right? I now have so much pain in my foot it hurts to walk. I dont want to be paranoid baut I really feel something is not right. My FP wants to give my me a steroid injection in my hip. I would like to have an MRI. Is that unreasonable? What should I try first? Kinda scared.

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2 replies
canadabob | @canadabob | Nov 27, 2023
In reply to @dazlin "@canadabob , GREAT!!! My primary has said he can handle me too....yet he never found the..." + (show)
@dazlin

@canadabob , GREAT!!! My primary has said he can handle me too....yet he never found the mgus.
Mayo does an extensive bloodwork which they call a bundle test. I'm so grateful to be a patient there/have them as my drs...they are like guardian angels to me. Hope you get seen soon, my best to you!!

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Thanks for wishes. Mine is IgG Kappa as well.

My ratio of Kappa/ Lambada is 1.65 at the very top of the range.

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1 reply
dazlin | @dazlin | Nov 27, 2023
In reply to @canadabob "Thanks for wishes. Mine is IgG Kappa as well. My ratio of Kappa/ Lambada is 1.65..." + (show)
@canadabob

Thanks for wishes. Mine is IgG Kappa as well.

My ratio of Kappa/ Lambada is 1.65 at the very top of the range.

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@canadabob , that's a good ratio. Mine has fluctuated to a bit over 2.00...then dropped back down on my last test about 8 mos ago. Usually that's a good sign M spike is down too. I'm anxious to go this Thursday, just curious.

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dazlin | @dazlin | Nov 27, 2023
In reply to @diana59 "I was diagnosed withMGUS in 2022. I saw a hemologist who resured me to follow it...." + (show)
@diana59

I was diagnosed withMGUS in 2022. I saw a hemologist who resured me to follow it. If i get bone pain to be seen. I went to my Family Practice doc. who diagnosed my hip pain as bursitis. Three weeks later I still have hip pain, have developed knee pain. Maybe because Im not walking right? I now have so much pain in my foot it hurts to walk. I dont want to be paranoid baut I really feel something is not right. My FP wants to give my me a steroid injection in my hip. I would like to have an MRI. Is that unreasonable? What should I try first? Kinda scared.

Jump to this post

@diana59 , I would insist on some testing. Mayo NEVER prescribes anything without further testing.
It's just so strange...seems most primary drs prescribe a bandaid, no tests. Mine does the same thing, so I rarely bother to complain to him...I wait till I go to Mayo. That said, there were times I felt like toooooo many tests were being done, so I now speak up about that, necessity only. I went through ALOT!! Hope you get to the root, and then only treat accordingly.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 27, 2023
In reply to @diana59 "I was diagnosed withMGUS in 2022. I saw a hemologist who resured me to follow it...." + (show)
@diana59

I was diagnosed withMGUS in 2022. I saw a hemologist who resured me to follow it. If i get bone pain to be seen. I went to my Family Practice doc. who diagnosed my hip pain as bursitis. Three weeks later I still have hip pain, have developed knee pain. Maybe because Im not walking right? I now have so much pain in my foot it hurts to walk. I dont want to be paranoid baut I really feel something is not right. My FP wants to give my me a steroid injection in my hip. I would like to have an MRI. Is that unreasonable? What should I try first? Kinda scared.

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@diana59 Welcome to Mayo Clinic Connect.

Are you being followed by a hematologist oncologist? In my experience, a family practice provider simply does not have the knowledge to work with MGUS patients. I would at least check with your specialist to get their opinion, so you can consider what your decision will be.

Will you let us know what you find out, please?
Ginger

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1 reply
diana59 | @diana59 | Nov 27, 2023
In reply to @gingerw "@diana59 Welcome to Mayo Clinic Connect. Are you being followed by a hematologist oncologist? In my..." + (show)
@gingerw

@diana59 Welcome to Mayo Clinic Connect.

Are you being followed by a hematologist oncologist? In my experience, a family practice provider simply does not have the knowledge to work with MGUS patients. I would at least check with your specialist to get their opinion, so you can consider what your decision will be.

Will you let us know what you find out, please?
Ginger

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Thank you. I will do that.

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diana59 | @diana59 | Nov 27, 2023
In reply to @dazlin "@diana59 , I would insist on some testing. Mayo NEVER prescribes anything without further testing. It's..." + (show)
@dazlin

@diana59 , I would insist on some testing. Mayo NEVER prescribes anything without further testing.
It's just so strange...seems most primary drs prescribe a bandaid, no tests. Mine does the same thing, so I rarely bother to complain to him...I wait till I go to Mayo. That said, there were times I felt like toooooo many tests were being done, so I now speak up about that, necessity only. I went through ALOT!! Hope you get to the root, and then only treat accordingly.

Jump to this post

Thank you

REPLY
canadabob | @canadabob | Nov 27, 2023
In reply to @dazlin "@canadabob , that's a good ratio. Mine has fluctuated to a bit over 2.00...then dropped back..." + (show)
@dazlin

@canadabob , that's a good ratio. Mine has fluctuated to a bit over 2.00...then dropped back down on my last test about 8 mos ago. Usually that's a good sign M spike is down too. I'm anxious to go this Thursday, just curious.

Jump to this post

I'm not sure what "M spike" refers to.

If it's what I think it is, mine has fluctuated between 1.4 (4 years ago) to an average of 1.7 but the last one was 2.1

I'm hoping a hematologist can make sense of this, because I don't think my neurologist is the right guy for this.

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1 reply
dazlin | @dazlin | Nov 28, 2023

@canadabob. M SPIKE is an abnormal protein present in blood. You can Google it for more info. I do believe there's range whether treatment or not is needed.
I'm sure your hematologist should explain more to you. Hopefully your Dr has a good background in MGUS and Myeloma.

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Mentor
Lori, Volunteer Mentor | @loribmt | Nov 28, 2023
In reply to @canadabob "I'm not sure what "M spike" refers to. If it's what I think it is, mine..." + (show)
@canadabob

I'm not sure what "M spike" refers to.

If it's what I think it is, mine has fluctuated between 1.4 (4 years ago) to an average of 1.7 but the last one was 2.1

I'm hoping a hematologist can make sense of this, because I don't think my neurologist is the right guy for this.

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Hi @canadabob. This informational article from verywellhealth.com may help give you a better understanding of MGUS and why the M protein plays a significant role in this blood/bone marrow disorder.

https://www.verywellhealth.com/monoclonal-gammopathy-of-undetermined-significance-4771132

Long term, a hematologist would be a more appropriate specialist for you if there is any progression of your MGUS.
A hematologist is a doctor who specializes in researching, diagnosing, treating, and preventing blood disorders. It might be time to add a new doctor to your team, what do you think?

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