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?

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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)….

ladyesheryl | @ladyesheryl | May 9, 2023

diagnosed in Jan. 2023 at age 72

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.

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)

my eGFR is 54.8 and they tell me the range is 60-120 mL/min. I am diagnosed as chronic kidney disease stage 3A.
By the way good luck to your friend, he is doing SO well with one kidney.
god bless him

Patty, Volunteer Mentor | @pmm | May 10, 2023

In reply to @cgerwig66 "I was diagnosed with mgus over a year ago. Since then I have been really sick..." + (show)

Clifford do you have any other health issues? I’m so sorry you aren’t getting the answers about your symptoms. It’s frustrating.
Have you a good hematologist/oncologist? Maybe a second opinion?
Do they do routine blood analysis to check to see if your MGUS is progressing?
I’m so sorry. Nothing worse than feeling sick unless it is feeling sick and having no answers as to why.
My MGUS was diagnosed for the first time in August 2021. If I felt bad… Which I don’t… I would consider going to the Mayo Clinic. I’m in Arkansas and not close to Phoenix or Rochester, but it would be worth it to get a second opinion. I like my hematologist/oncologist very much and we are watching my numbers. We do bloodwork every 3 to 4 months. I do have this pesky neuropathy in my feet, which somewhat limits my level of activity. I try to just carry on, ignoring my poor feet. They complain a lot but 🤷🏼‍♀️
Check back in and let us know how you are doing.
Patty

2121 | @leslie2121 | May 11, 2023

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

eGFR above 60 is considered “normal” and certainly for 93 it can slow down with age, and 1 kidney.
Perfect eGFR can be 90- usually found in healthy young people.

Clifford Gerwig | @cgerwig66 | May 11, 2023

In reply to @pmm "Clifford do you have any other health issues? I’m so sorry you aren’t getting the answers..." + (show)

I have mostly just shortness of breath and neuropathy. They check my blood every month now. I have a very high lamba light chain. I ve had a fat pad biopsy it's just that my hematologist thinks that is golden. And I've read it's has its inaccuracy.

Patty, Volunteer Mentor | @pmm | May 11, 2023

Is he or she a multiple myeloma specialist? I really think that’s key. The information keeps changing all the time. Fortunately… There is much more efficient treatment now than there used to be and they really have to stay on top of that.
And I’m sorry about your shortness of breath and neuropathy.
Patty