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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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Hi Colleen,

Thank you for reaching out to me. I was trying to respond to @circawdm, but I guess I don't know what I'm doing yet. I haven't set up a password to access the site because I didn't see how to do that. So maybe that's why I messed up, or maybe it was because I clicked on the wrong reply button.

Yes, I was recently diagnosed with MGUS by a new internist. I started having neuropathy in my feet about 4 years ago. After 2 years of being told it was nothing to worry about I finally went to a neurologist. He did a variety of tests including the electrophoresis that revealed an MGUS spike of 0.4. I remember he told me about the M spike value but said that I didn't have MM and said my neuropathy was idiopathic. I had not idea what the M spike meant, and I don't think the results were ever sent to my internist because he was with a different health system. I didn't keep on top of it. Fast forward to August 22 when I met with a new internist who happened to be in the same health system as the neurologist I saw 2 years ago. She noticed the M spike value, retested me and found my M spike was still the same. She also did a urine test that confirmed the electrophoresis, and advised me to see a hematologist.

Sorry, for the long background. The soonest appointment I could get with a hematologist was October 19th. I'm trying not to get ahead of the facts, but it's very hard not to be extremely concerned that I've had MGUS probably for at least 4 years. It's possible it's progressed beyond just MGUS.

So much is out of my control, but I've been looking a different studies of the effects of diet and supplementals such as Curcumin C3 Complex and Metformin. I've spoken with Dr. Urvi Shah's staff about joining the study she is doing on diet at Memorial Sloan Kettering. I have to admit that I'm somewhat conflicted about joining the study because of the need to be monitored in NJ or NY and the possibility of being assigned to a control group that gets nothing for the first few months of the study. I was hoping to get more information about the Dr. and diet @circawdm referenced in his post.

Thank you so much for reaching out to me, and for providing such great moderation of this group.

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Replies to "Hi Colleen, Thank you for reaching out to me. I was trying to respond to @circawdm,..."

Deborah, you are using the reply and @mention function perfectly. By @mentioning @circawdm, he will see your post (and now mine) and can share more about the doctor and diet to which he refers in an earlier post.

@circawdm, Lori is right, Simply report the post you wish to edit and I'll take care of it.