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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: Sep 19 12:31pm | Replies (818)

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@ilovebirbs

I was just diagnosed with MGUS and I don't know what to expect. I NEVER heard of MGUS! I don't go back to the doctor until March. I'm trying not to worry too much.

Thank you

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Replies to "I was just diagnosed with MGUS and I don't know what to expect. I NEVER heard..."

Now you just wait to repeat the test. It’s about 1 or 2 will be positive out of 100. That’s what I read. I was also recently diagnosed with it. I go back in February for re-check. Every 6 months. I would just say relax. There is not more we can do. If there was something we could do to prevent it, that’s one thing but there isn’t.

Welcome to Connect, @ilovebirbs It’s really scary getting a new diagnosis out of the blue and having no clue what it’s all about. There are a number of members in our forum who also have developed the condition referred to as MGUS which stands for Monoclonal Gammopathy of Undetermined significance which is a real mouthful to remember.

Basically, it’s a condition in which there’s evidence of an abnormal protein found in your blood called M Protein. It’s often very slow to develop and some people never need to worry about treatment. However, over time if there is too much of the M protein in the blood, it can cause some damage in the body. So that’s why your doctor will monitor your blood work on a routine schedule. Usually it’s referred to as watch and wait, or active surveillance. Your doctor will look for trends in your blood results to determine if and when there would need to be treatment started.
To give you a little more information, there are 2 ‘go-to’ articles I like to cite for new members because they give a good overall explanation about MGUS, what to expect and potential treatments.

~From Verywellhealth.com
https://www.verywellhealth.com/monoclonal-gammopathy-of-undetermined-significance-4771132
~From healthline.com https://www.healthline.com/health/how-serious-is-mgus

There are also several members with MGUS in related discussions. I’d like to introduce you to @mjlandin, @gingerw @ @allstaedt57 @fayeraye @mgrspixi25 @sjgray and many others in this conversation about MGUS

Does Anyone Else Have MGUS?
https://connect.mayoclinic.org/discussion/mgus-diagnosis/
The best thing you can do is stay off Dr Google because too much searching often leads us down a rabbit hole of misinformation. I’m sorry your current doctor didn’t give you very much information but you’ll find you’re not alone with the new family you just gained here in Connect.

One suggestion that you may want to consider is getting a referral to a hematologist who specializes in blood disorders if you haven’t already.
Were you having any symptoms that lead to the diagnosis or was this found randomly with your annual physical?

Greetings! Oh, I remember those early days after I was diagnosed so well. As though they were yesterday. All that reading I did on Google that scared me to death. I strongly recommend avoiding Dr. Google. Dr. Google is a glass half empty kind of gal.
I think they do read about MGUS in a med school but it’s really not all that fun for them. Nothing to remove surgically and no course of treatment except for watch and wait. A generalist won’t know much about it.

Once I finally got into a oncologist/hematologist I was able to ask all my questions. I made a very long list and typed it out and took a hard copy in with me to see him for the first time. As I asked my questions I checked them off my list, making little notes because you leave the office and you wonder “what the heck did he say about that?“ There is so much information to absorb and it seems rather complicated. It’s all pretty well-defined however. It’s like a bingo game and the numbers on your bloodwork will be evaluated, and if they reach a certain threshold and configuration, your specialist will discuss treatment. It’s unlikely that this will happen to you. It’s statistically improbable. I imagine most people with MGUS die of something else and don’t even know they had it. I often wonder if it is a blessing or a curse to know that you have it because it’s an additional worry, but I think ultimately, I’m glad that I know. For one thing, I get the best medical care of anyone I know because I go in for bloodwork Every 3 to 6 months. I say 3 to 6 because I just recently have “graduated” from every three months and have not yet had my first “six month” appointment.
At the point that I would require intervention, I would opt for a second opinion. I would go to the Mayo clinic. I hope that never happens. But if it does, I am quite confident that the gains that have been made in the treatment of multiple myeloma over the past decade are life saving.
My biggest hope for you is that you can relax. Anxiety can literally make you feel sick. Trust the science. Find a doctor who is experienced, well trained and takes the time to answer all your questions then live your life. Don’t waste a day worrying about things over which you have no control.
Wishing you all the best on this journey. Check in and let us know how you’re doing. I learn a lot from my fellow pilgrims.
Patty