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?

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

116w72ndst | @116w72ndst | May 8, 2023
In reply to @116w72ndst "I am new on this. I have diagnosed with MGUS and iron deficiency and cud stage..." + (show)
@116w72ndst

I am new on this. I have diagnosed with MGUS and iron deficiency and cud stage 3. My kappa and lambda elevated with ratio of .69. My RBC , Hemoglobin and Hematocrit are in lower range and engraving of 54.8. Any one can shed some light on it. Thanks

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My sedimentation ratio 36 and Ig g of 1810

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Mentor
Patty, Volunteer Mentor | @pmm | May 8, 2023
In reply to @116w72ndst "I am new on this. I have diagnosed with MGUS and iron deficiency and cud stage..." + (show)
@116w72ndst

I am new on this. I have diagnosed with MGUS and iron deficiency and cud stage 3. My kappa and lambda elevated with ratio of .69. My RBC , Hemoglobin and Hematocrit are in lower range and engraving of 54.8. Any one can shed some light on it. Thanks

Jump to this post

Greetings! Looks like lab work labyrinth. Do you have a Hem/onc physician who can interpret these results for you? One of the pitfalls of My Chart is that you can see lab results almost immediately and are out there fretting about it long before you see a physician.
I would encourage you to call your physician and ask for information or at least an expedited appointment. Stress and anxiety will make you feel sick and can actually kick your white blood count into gear.
Dr Google is a glass-half-full kind of guy so try to avoid his counsel.
This board is great with some practical tips on negotiating the medical systems and especially as support. I’m glad you found us.
Patty

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1 reply
116w72ndst | @116w72ndst | May 8, 2023
In reply to @pmm "Greetings! Looks like lab work labyrinth. Do you have a Hem/onc physician who can interpret these..." + (show)
@pmm

Greetings! Looks like lab work labyrinth. Do you have a Hem/onc physician who can interpret these results for you? One of the pitfalls of My Chart is that you can see lab results almost immediately and are out there fretting about it long before you see a physician.
I would encourage you to call your physician and ask for information or at least an expedited appointment. Stress and anxiety will make you feel sick and can actually kick your white blood count into gear.
Dr Google is a glass-half-full kind of guy so try to avoid his counsel.
This board is great with some practical tips on negotiating the medical systems and especially as support. I’m glad you found us.
Patty

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Thanks. Getting a BMB done this Wednesday. Have a hematologist and already spoke to her.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 8, 2023
In reply to @116w72ndst "I am new on this. I have diagnosed with MGUS and iron deficiency and cud stage..." + (show)
@116w72ndst

I am new on this. I have diagnosed with MGUS and iron deficiency and cud stage 3. My kappa and lambda elevated with ratio of .69. My RBC , Hemoglobin and Hematocrit are in lower range and engraving of 54.8. Any one can shed some light on it. Thanks

Jump to this post

Hi @116w72ndst, I'd like to add my welcome and to let you know that I moved your post to this existing discussion:
- Does anyone else have MGUS?: https://connect.mayoclinic.org/discussion/mgus-diagnosis/

I did this so that you can read previous posts and continue to connect with @pmm and the whole MGUS gang, including @gingerw @mjlandin @deborahjb @raye @tallyteresa @ea1 and many more.

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Mentor
Ginger, Volunteer Mentor | @gingerw | May 8, 2023
In reply to @116w72ndst "Thanks. Getting a BMB done this Wednesday. Have a hematologist and already spoke to her." + (show)
@116w72ndst

Thanks. Getting a BMB done this Wednesday. Have a hematologist and already spoke to her.

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@116w72ndst After your bone marrow biopsy, and consultation with your doctor, things may indeed seem clearer to you. So many of us go for a long time with no advancement of disease. We get quarterly or semi-annual checkups of bloodwork, to monitor the MGUS. My suggestion is to live your life, do not dwell on the diagnosis.

Will you let me know what your hematologist advises you after the biopsy and consultation?
Ginger

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1 reply
116w72ndst | @116w72ndst | May 8, 2023
In reply to @gingerw "@116w72ndst After your bone marrow biopsy, and consultation with your doctor, things may indeed seem clearer..." + (show)
@gingerw

@116w72ndst After your bone marrow biopsy, and consultation with your doctor, things may indeed seem clearer to you. So many of us go for a long time with no advancement of disease. We get quarterly or semi-annual checkups of bloodwork, to monitor the MGUS. My suggestion is to live your life, do not dwell on the diagnosis.

Will you let me know what your hematologist advises you after the biopsy and consultation?
Ginger

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thanks @gingerw
I most certainly will
thanks

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Clifford Gerwig | @cgerwig66 | May 9, 2023

I was diagnosed with mgus over a year ago. Since then I have been really sick I have severe neuropathy shortness of breath.
I get no answers for the doctors. I have had bone biopsy fatpad biopsy and kidney biopsy. No answers. I hope you the best with your mgus. And I hope doctors get a handle on it I believe. It needs a lot more attention that it gets.

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2 replies
laurie6 | @laurie6 | May 9, 2023
In reply to @116w72ndst "I am new on this. I have diagnosed with MGUS and iron deficiency and cud stage..." + (show)
@116w72ndst

I am new on this. I have diagnosed with MGUS and iron deficiency and cud stage 3. My kappa and lambda elevated with ratio of .69. My RBC , Hemoglobin and Hematocrit are in lower range and engraving of 54.8. Any one can shed some light on it. Thanks

Jump to this post

My nephrologist (kidney specialist) said the eGFR only goes to 60!

A friend of mine has one kidney and she has eGFR 38 and is turning 93 in February 2024!

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3 replies
susanh824 | @susanh824 | May 9, 2023

I’ve had MGUS for at least ten years. I see an oncologist once a year. I’m 64 now, and so far, so good!

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1 reply
laurie6 | @laurie6 | May 9, 2023

Re: Blood results back way before Dr appts .

My Drs NEVER AGREE with my imagination fueled by google!

Peek if you must, but the interpretation of the results is the important part and bots have no medical training (yet).

I always peek and have had 4 imaginary deadly diseases by the time I see the dr. Then she tells me to “keep up the good work” because my labs are better! Lol

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