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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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msh466 | @msh466 | May 22 8:52am

This MGUS is insidious disease. So my BM had 15% PC. That is the only indication that I now have SMM. All blood work is still abnormal but stable. M protein below 1. Ration low. IgA sky high but it’s always been that way. So no indication showing progression from MGUS to SMM except thru BM. Also cytology studies. FISH analysis. Chromosome abnormalities are all thru the bone marrow. These are vital for treatment and long range assessments for overall forecast and development of treatment. Getting the jump on this disease is how I may get the upper hand in finding this early.

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Mentor
Patty, Volunteer Mentor | @pmm | May 22 9:20am
In reply to @msh466 "Well that is most unfortunate. Kind of damn if you do or don’t. Full disclosure isn’t..." + (show)
@msh466

Well that is most unfortunate. Kind of damn if you do or don’t. Full disclosure isn’t revealed they deny your claim. Being truthful you get the same results. I personally do not carry life insurance because, well the first instance you show any symptoms or illness they deny your coverage. It’s fine if you die suddenly but that’s pretty rare. Most of us battle some form of illness for years. Paying your monthly premium means nothing to these companies. It’s about them not you. Kind of heartless I think. I’m sorry. Corporate greed rubs me the wrong way.

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@msh466
I wholeheartedly agree referencing the corporate grade part.

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amberl99 | @amberl99 | May 23 10:04am
In reply to @msh466 "Well that is most unfortunate. Kind of damn if you do or don’t. Full disclosure isn’t..." + (show)
@msh466

Well that is most unfortunate. Kind of damn if you do or don’t. Full disclosure isn’t revealed they deny your claim. Being truthful you get the same results. I personally do not carry life insurance because, well the first instance you show any symptoms or illness they deny your coverage. It’s fine if you die suddenly but that’s pretty rare. Most of us battle some form of illness for years. Paying your monthly premium means nothing to these companies. It’s about them not you. Kind of heartless I think. I’m sorry. Corporate greed rubs me the wrong way.

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The idea is to get the insurance before one is diagnosed with anything, ie, when still young. They can’t cancel once the policy is in place altho most premiums go up as one ages. It’s not a charity. They are a money making business as all businesses are. I had a policy at one time but didn’t continue it. That’s ok, no one relies on me for my income and I’d rather have the monthly payments for me.

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1 reply
msh466 | @msh466 | May 23 2:12pm
In reply to @amberl99 "The idea is to get the insurance before one is diagnosed with anything, ie, when still..." + (show)
@amberl99

The idea is to get the insurance before one is diagnosed with anything, ie, when still young. They can’t cancel once the policy is in place altho most premiums go up as one ages. It’s not a charity. They are a money making business as all businesses are. I had a policy at one time but didn’t continue it. That’s ok, no one relies on me for my income and I’d rather have the monthly payments for me.

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I only had life insurance when my kids were young. Once grown and moved out I discontinued it. My wife and I hade money so no need for life insurance. But all insurances always goes up. Regardless if you file no claim. Have no health issues. Have 20 year old junkers for cars. They jack up rates. So not a fan of insurance companies. Oh I know they’re in the business to make money. they also have the power to drop your policy.

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1 reply
maddogstormy | @maddogstormy | 6 days ago
In reply to @msh466 "I have smoldering multiple myeloma. Not sure how long I had MGUS before it progressed. Found..." + (show)
@msh466

I have smoldering multiple myeloma. Not sure how long I had MGUS before it progressed. Found totally by accident. M Protein is 2.0 and 15% plasma cells in bone marrow. Many do not progress past MGUS. This is a condition they will have the rest of their lives. Get tested often. Follow ups often and wait and see what develops if anything. No symptoms or illness with MGUS. So catching it with blood tests is usually by random. I too was taken aback seeing Hemonc doctor. Felt overwhelmed like this is it. But it’s been stable now for over a year. No progression or lesions and calcium normal. Abnormalities in M Proteins. Super high IgA. But they haven’t moved much. Blood work is due in May. Always a tense time waiting for results. A lot of this is mental. It’s a roller coaster of emotions.

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Hello. I am new to SMM since march 25 and have my first follow up appointment with the doctor next week. MRI marrow scan was negative thankfully. I am having increased burning neuropathy in both hands and some thing new that feels like a very low level deep ache throughout my body. As though my bones were swollen. And I am extremely fatigued. I have been offered a clinical trial for Linvoseltamab to begin treatment. The MGUS is now “significant”. Smoldering is a strange word and I can’t help but imagine I am slowly falling deeper into this new kind of hell. I have so much and so many supporting me. Great doctors. Loving family and friends. Getting educated and maintaining balance is super challenging. I did have a great conversation yesterday with someone at MMRF about beginning treatment so early. It is really helpful to read all of these threads. I remember the years I had MGUS and sure wish I was still there and I remember one thought I had. Enjoy this while it lasts. Just in case it does progress. I can tell my self the same thing now. Enjoy this while it lasts. Just in case things change.

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amberl99 | @amberl99 | 6 days ago
In reply to @msh466 "I only had life insurance when my kids were young. Once grown and moved out I..." + (show)
@msh466

I only had life insurance when my kids were young. Once grown and moved out I discontinued it. My wife and I hade money so no need for life insurance. But all insurances always goes up. Regardless if you file no claim. Have no health issues. Have 20 year old junkers for cars. They jack up rates. So not a fan of insurance companies. Oh I know they’re in the business to make money. they also have the power to drop your policy.

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True for auto insurance but not for life—or they would drop everyone at a certain old age. Actually some policies do have a stop age for that reason.

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