Is there any evidence that progression of MGUS or SMM is slowed by dietary changes? Avoidance of types of food? Addition of specific spices to the diet?
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Pyrophosphate scans , history and labs with a doctor knowledgeable about the different forms of Amyloidosis
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This scan can be used to find out if you have a rare disease called cardiac amyloidosis. Pat fad biopsy is quite accurate per my hematologist and the 2020 article showing test specificity of 99% and a sensitivity of 91%
I guess there is no 100% accurate single test
Yes it is more specific for cardiac Amyloidosis
always varying opinions for testing protocols
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Thank you for your postings. I also have MGUS (M-spike protein 0.4) and neuropathy in my feet. I have not have a full hematological workup but will soon. Would you mind sharing information on the diet and supplements that the MM survivor recommended?
Hi @deborahjb, welcome. It appears that you're asking a question to a specific post or member, but I'm not sure whom. Can you @mention to whom you're referring.
In addition to the messages here in this discussion, you may also be interested in this related discussion:
– MGUS diet: Any tips on food to enjoy or prevent progression? https://connect.mayoclinic.org/discussion/mgus-bgus-diet/
Have you only recently been diagnosed with MGUS?
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.
My journey began with a mother who had very rare autoimmune disorders, diabetes, etc. She died at an early age and was very miserable for the last 15 years of her life. Given, that was in the late 80s and they did not know nearly as much as they do now, for the most part, her illnesses have not advanced much from what I read by way of treatments. She trusted Mayo Clinic and went there 2-3 x a year with my father as her support system. Having a support system (which I do not now) is so helpful.
I started 10+ years ago with peripheral neuropathy symptoms in my feet. All the doctors I saw attributed it to my very flat feet and to my very low spinal disc herniation and early degenerative disc disease, pressing on nerves. A few tests were run to rule out 3-4 obvious auto-immune diseases, but none would have shown MGUS. CBCs and CMP were always pretty much normal. Ditto ANA and CRP tests were done.
It wasn't until I consulted a physiatrist about my feet symptoms and he decided to run some extensive blood tests on top of the EMG and NCS (both normal) that we saw an IgM paraprotein in my blood and he then sent me on to the large cancer center here. More tests and a BMB confirmed low-risk MGUS. I met and had a long interview via email and by phone with a MM survivor who had it pretty badly and has been in remission using supplements and a very strict diet for 25 years now. He made some suggestions, many of which I have adopted, especially the diet. He has an MM/MGUS group online also.
I also decided to contact a very well-respected MGUS/MM specialist at Mayo for a phone consult and to review all of my medical histories for the past 6-8 years. He said more is going on but is puzzling to him because all I have going on clinically is the PR and paraprotein basically. I will go for a battery of more tests next week locally. Depending on what they say, I will probably have a "fat pad biopsy" done sometime after those results come back.
So, without getting into a longer, boring story, that is my journey as it relates to MM/MGUS and related things.
I sure wish this group had an EDIT option for comments! If there is one, please share how to access it. I pride myself in writing intelligent, properly spelled sentences and it is so frustrating to not be able to "clean up" a typo!!
Hi @circawdm Oh, don’t you hate when you spot a typo and it’s too late?!? Never fear…you have 2 options. If you discover the error within a 30 minute window, simply click the 3 little dots in the lower right corner of your reply. At the very bottom it will say Edit. Go ahead and correct your reply.
If it’s later than 30 minutes, the self-edit is gone but you can still just ‘report comment’ from that same menu. A moderator will see your message. Let them know what you want corrected and you’re good to go.
Does that help you out?
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.
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.
There was a lively discussion of Curcumin on FB which made me curious.
I'm not sure if there is any evidence on any specific diet related to
Monoclonal gammopathy of undetermined significance (MGUS), which is what I have.
However I have been a vegan for 20 years and about the time I was diagnosed with magus, (approx 8 years ago), I had been eating a very lot of pure peanut butter on a regular basis. Then I read peanuts are actually very bad for you and can even increase proteins in your blood. I since stopped and now only moderately eat almond butter. My doctor said she really didn't think it was related. My yearly blood tests now are always with low enough levels, but the protein is still present, but still posing no threat. I really don't have any other major issues aside from my normal allergies, my weight is low and I'm healthy. I feel that being a vegan, eating lots of green asian vegetables, mushrooms, non gluten breads and rice, (I have Celiac), and drinking teas is the way to stay healthy and to live a long life. Hopefully that will continue to be the case.
I have Celiac as well. Diagnosed 14 years ago. I’m trying to eat more plants and rarely eat red meat. Mostly we eat chicken and fish as I don’t think I could go totally plant based.
What kind of teas?
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