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pmm (@pmm)

What’s the science on diet and MGUS/SMM?

Blood Cancers & Disorders | Last Active: Oct 30, 2022 | Replies (49)

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@mascot

Sound similar!This is so interesting as I have had MGUS now for 12 years and all I ever hear is that I don’t need treatment yet (thank goodness) as the treatment is also destructive to the body. So I cope with joint pains, especially hip , stumbling, PN in hands and feet and sleeplessness, tiredness, heart racing on my own.
I also consulted a neurologist if the nerves were transmitting with delay but he said that all is in Norm. Cardiologist said basically the same.
I do hv asthma and allergies but they were there before.
Does anyone have unspecified symptoms like I do?
Diagnosis:Lambda gammopathy and lambda bench jones proteinemia.
One feels like a hypochondriac
Cheers and glad to be here.

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Replies to "Sound similar!This is so interesting as I have had MGUS now for 12 years and all..."

Welcome, @mascot. I think @pmm @gingerw @circawdm @raye @carolee888 and others may have some thoughts for you about unspecified symptoms. They are so frustrating.

Please forgive me for suggesting something else to look into, but have you tried a sleep study yet? Getting adequate sleep cures and prevents a number of ills, some of which you mentioned. I’ve been using an AutoPap for 23 years for obstructive sleep apnea and sleep very well. (Watching IgM Kappa MGUS.) Hope this is helpful.

@mascot Welcome to Mayo Clinic Connect. I'm glad you found us, and that you can report so many years with MGUS that has not progressed! Many members here worry about MGUS evolving quickly into other issues.

While I am under chemo for multiple myeloma, many of your symptoms are the same as what I have experienced. What has been beneficial for me is getting a good diet started, with as few processed foods as possible. And as others have mentioned, yes, that means cutting way down on sugars. Beyond that, getting moderate exercise, even when you don't feel like it, or especially when you don't feel like it. If you feel unstable on your feet, use an aid, whether it be a cane or rollator; don't try to tough it out and fall! Take little naps if possible, when you feel the need. My cat loves the nap-with-cat-in-my-lap time! Taking Tylenol on the worst days seem to help me smooth my reactions, and as we head in to the colder months now, I keep that bottle handy.

I see you mention bench jones proteinuria, which indicates there is some kidney involvement. Do you have a nephrologist monitoring you, also? Please don't feel like a hypochondriac! Our bodies are indeed miracle machines, and we can have so many things manifesting, it's hard to be positive.
Ginger