Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

116w72ndst | @116w72ndst | May 9, 2023

In reply to @laurie6 "My nephrologist (kidney specialist) said the eGFR only goes to 60! A friend of mine has..." + (show)

thank you
I will keep an eye on this.

ladyesheryl | @ladyesheryl | May 9, 2023

diagnosed in Jan. 2023 at age 72

laurie6 | @laurie6 | May 9, 2023

In reply to @susanh824 "I’ve had MGUS for at least ten years. I see an oncologist once a year. I’m..." + (show)

6 years AT LEAST..

Still checking in 6 months.

So I guess they expect me to make it that long…

Which I appreciate very much because mom has just been diagnosed with Parkinson’s and I need to Google that disease instead of my slowwww moving blood issue(s)….

laurie6 | @laurie6 | May 9, 2023

Re: Blood results back way before Dr appts .

My Drs NEVER AGREE with my imagination fueled by google!

Peek if you must, but the interpretation of the results is the important part and bots have no medical training (yet).

I always peek and have had 4 imaginary deadly diseases by the time I see the dr. Then she tells me to “keep up the good work” because my labs are better! Lol

susanh824 | @susanh824 | May 9, 2023

I’ve had MGUS for at least ten years. I see an oncologist once a year. I’m 64 now, and so far, so good!

laurie6 | @laurie6 | May 9, 2023

In reply to @116w72ndst "I am new on this. I have diagnosed with MGUS and iron deficiency and cud stage..." + (show)

My nephrologist (kidney specialist) said the eGFR only goes to 60!

A friend of mine has one kidney and she has eGFR 38 and is turning 93 in February 2024!

Clifford Gerwig | @cgerwig66 | May 9, 2023

I was diagnosed with mgus over a year ago. Since then I have been really sick I have severe neuropathy shortness of breath.
I get no answers for the doctors. I have had bone biopsy fatpad biopsy and kidney biopsy. No answers. I hope you the best with your mgus. And I hope doctors get a handle on it I believe. It needs a lot more attention that it gets.

116w72ndst | @116w72ndst | May 8, 2023

In reply to @gingerw "@116w72ndst After your bone marrow biopsy, and consultation with your doctor, things may indeed seem clearer..." + (show)

thanks @gingerw
I most certainly will
thanks

Ginger, Volunteer Mentor | @gingerw | May 8, 2023

In reply to @116w72ndst "Thanks. Getting a BMB done this Wednesday. Have a hematologist and already spoke to her." + (show)

@116w72ndst After your bone marrow biopsy, and consultation with your doctor, things may indeed seem clearer to you. So many of us go for a long time with no advancement of disease. We get quarterly or semi-annual checkups of bloodwork, to monitor the MGUS. My suggestion is to live your life, do not dwell on the diagnosis.

Will you let me know what your hematologist advises you after the biopsy and consultation?
Ginger

Colleen Young, Connect Director | @colleenyoung | May 8, 2023

In reply to @116w72ndst "I am new on this. I have diagnosed with MGUS and iron deficiency and cud stage..." + (show)

Hi @116w72ndst, I'd like to add my welcome and to let you know that I moved your post to this existing discussion:
- Does anyone else have MGUS?: https://connect.mayoclinic.org/discussion/mgus-diagnosis/

I did this so that you can read previous posts and continue to connect with @pmm and the whole MGUS gang, including @gingerw @mjlandin @deborahjb @raye @tallyteresa @ea1 and many more.

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