1. < Blood Cancers & Disorders

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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melij | @melij | May 14, 2023
In reply to @cherylmcg "I have had MGUS for about 5 years which is low but slowly increasing. I have..." + (show)
@cherylmcg

I have had MGUS for about 5 years which is low but slowly increasing. I have neuropathy and fatigue. I recently saw a number of super healthy women playing pickleball in the evening and was overcome with sadness at my disability.

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cherylmcg such a valid feeling - losing out in so many activities has been an issue for me as well. My friend said it was like grieving a loss and to acknowledge those feelings. I have learned to adjust how I do sports to my changing level of ability and not worry about those super healthy women …..xo 💓

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cherylmcg | @cherylmcg | May 13, 2023
In reply to @cgerwig66 "I was diagnosed with mgus over a year ago. Since then I have been really sick..." + (show)
@cgerwig66

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.

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I have had MGUS for about 5 years which is low but slowly increasing. I have neuropathy and fatigue. I recently saw a number of super healthy women playing pickleball in the evening and was overcome with sadness at my disability.

REPLY
2 replies
Mentor
Patty, Volunteer Mentor | @pmm | May 12, 2023
In reply to @cgerwig66 "I'm starting to have spells my blood sugar gets really low and I'm not diabetic." + (show)
@cgerwig66

I'm starting to have spells my blood sugar gets really low and I'm not diabetic.

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My blood sugar levels are overachievers.

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Clifford Gerwig | @cgerwig66 | May 12, 2023
In reply to @pmm "Clifford do you have any other health issues? I’m so sorry you aren’t getting the answers..." + (show)
@pmm

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

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I'm starting to have spells my blood sugar gets really low and I'm not diabetic.

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2 replies
Clifford Gerwig | @cgerwig66 | May 12, 2023

Dose any one with MGUS have a problem with low blood sugar.

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Mentor
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

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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)
@pmm

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

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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.

REPLY
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)
@laurie6

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!

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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.

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Mentor
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)
@cgerwig66

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.

Jump to this post

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

REPLY
2 replies
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)
@laurie6

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!

Jump to this post

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

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