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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junipergin | @juniperjgin | Jul 27 3:40pm
In reply to @kayabbott "Turmeric and curcumin have very poor absorption in the GI tract. Absorption is increased by taking..." + (show)
@kayabbott

Turmeric and curcumin have very poor absorption in the GI tract. Absorption is increased by taking curcumin with black pepper (which contains piperine), or slightly modifying the curcumin to make it more bioavailable for absorption (for example, a fat molecule is linked to the curcumin). I use 2 gm/day of Qunol bioavailable curcumin, but there are other brands. For some, there are side effects so it is good to check with a doctor/pharmacist before taking any supplements. https://pubs.acs.org/doi/10.1021/acsomega.2c07326 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10061533/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10061533/

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Thank you for sharing your tips on making the most of these potentially protective supplements!
Wishing you well!

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amyboylan1 | @amyboylan1 | Jul 27 3:48pm

Thank you! I haven’t had the bone scan. My doctor didn’t order it.

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laurinea | @laurinea | Aug 22 5:24am

Does anybody else get stingin joints with their MGUS, particularly behind the knees and elbow area?

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kayabbott | @kayabbott | Aug 23 8:07am
In reply to @laurinea "Does anybody else get stingin joints with their MGUS, particularly behind the knees and elbow area?" + (show)
@laurinea

Does anybody else get stingin joints with their MGUS, particularly behind the knees and elbow area?

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MGUS can present in many forms, including arthritis inflammation of joints and neuropathy. Check with you doctor on this. I have polyneuropathy (MGUS proteins hit my peripheral nerves, hasn't gotten worse over the years). Stretching and strengthening exercises help with joint inflammation.

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hsminc | @hsminc | Sep 18 6:24am

I have had MGUS since 2002 - a long time. I no longer get anxious after my semi annual blood draws waiting for my results. I think this could be due to having a different Mayo hematologist (the previous one retired), who seems less anxious about me than my previous one. For 19 years I had blood draws every three months.
My M spike has risen from .4 to 1.3 over these 22 years and my flc have risen dramatically with big bumps after each joint replacement surgery (4).

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1 reply
teedlum | @teedlum | Sep 19 5:08am
In reply to @hsminc "I have had MGUS since 2002 - a long time. I no longer get anxious after..." + (show)
@hsminc

I have had MGUS since 2002 - a long time. I no longer get anxious after my semi annual blood draws waiting for my results. I think this could be due to having a different Mayo hematologist (the previous one retired), who seems less anxious about me than my previous one. For 19 years I had blood draws every three months.
My M spike has risen from .4 to 1.3 over these 22 years and my flc have risen dramatically with big bumps after each joint replacement surgery (4).

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What is flc?
Thank you 😊

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2 replies
kayabbott | @kayabbott | Sep 19 10:48am
In reply to @teedlum "What is flc? Thank you 😊" + (show)
@teedlum

What is flc?
Thank you 😊

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FLC refers to free light chains. For some of us they are Kappa, for others Lambda. The somewhat Y shapes normal cells are missing one leg for kappa, and the other for lambda, making the cell more L shapes. FLC plasma cells are like a guest that won't leave, they serve no purpose other than getting on our nerves (neuropathy) or bothering other cells. The healthy plasma cells at least go after invading organisms.

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1 reply
teedlum | @teedlum | Sep 19 11:16am
In reply to @kayabbott "FLC refers to free light chains. For some of us they are Kappa, for others Lambda...." + (show)
@kayabbott

FLC refers to free light chains. For some of us they are Kappa, for others Lambda. The somewhat Y shapes normal cells are missing one leg for kappa, and the other for lambda, making the cell more L shapes. FLC plasma cells are like a guest that won't leave, they serve no purpose other than getting on our nerves (neuropathy) or bothering other cells. The healthy plasma cells at least go after invading organisms.

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Thank you very much Kay. 😊

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hsminc | @hsminc | Sep 19 12:31pm
In reply to @teedlum "What is flc? Thank you 😊" + (show)
@teedlum

What is flc?
Thank you 😊

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FLC is free light chains (kappa and lambda). Measurement of these is used to help diagnoses and also monitor multiple myeloma and amyloidosis. Usually, the ratio of these two chains is also calculated.

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