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Diagnosed: MGUS

Posted by sandramgus @sandramgus, Jul 29, 2024

Hello everyone, I was diagnosed with MGUS after a routine physical, and my doctor made it sound like it wasn't that serious, but my (favorite) aunt died of multiple myeloma about 20 years ago. So, while I'm glad we caught it early, I have so much to learn. I'm still grieving the death of my mother (from a year ago) and it's a bit much to get this diagnosis after watching her die (she died from ALS.) I'm hoping to find some resources and advice here. Thank you all!

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smiles1951 | @smiles1951 | Nov 14 10:14am
In reply to @amberl99 "Appreciate the question. I just directed my pest company to skip this time while I send..." + (show)
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Appreciate the question. I just directed my pest company to skip this time while I send the chemical information to my MM specialist (I have SMM). Logic tells me yes, stop. So what if bugs eat up my house if I’m not around to see it? Now you know how my mind works! But I did ask and receive the document listing the chemical the pest company uses and will send it to my specialist. I’m not sure she will know as there’s so much about chemicals we don’t know the long term effects of.

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@amberl99 I grew up on a 360 acre Grade A Holstein farm where we pumped a chemical container and sprayed this over the backs of the herd. Flies dropped to the floor. We then went in under the cows, washing their teats and putting the straps over their backs that would hold the milkers. Seems like a no brainer now that those same chemicals killing flies entered my system and that of other farm kids and farmers.

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smiles1951 | @smiles1951 | Nov 14 10:17am

Change doctors immediately. Your current doctor doesn't seem to know anything about Multiple Myeloma and the many treatments available. Oh my gosh, I just can't believe someone is practicing medicine and not providing good information.

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Colleen Young, Connect Director | @colleenyoung | 1 day ago
In reply to @oneonly "Hi... Chin up!! I have also been diagnosed in October 25' with MGUS. I lost my..." + (show)
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Hi... Chin up!! I have also been diagnosed in October 25' with MGUS. I lost my father in January of 2021 to MULTIPLE MYELOMA; this of course is very concerning to me. I have had an "M" spike, and a paraprotein for 9 months. I have had IVIG treatments, to no avail. I also have severe copper deficiency, in which I get copper infusions for weekly. This entire process started with waking up one day, not being able to walk. Legs totally numb, and severe pain. KEEP UP ON WHAT YOUR BODY IS TELLING YOU, ALWAYS GO FURTHER IF YOU BELIEVE SOMETHING IS NOT CORRECT!! Keep up with your appts, and dr's, your body..... Let the BIG MAN HANDLE THE REST THROUGH PRAYER!

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@oneonly, good tips.

You said your diagnosis started with waking up one day not able to walk. How are you doing now?

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