MGUS

Posted by bonnie canby @bonniecanby, May 21, 2012

i Have gotten desperate enough to try to get an appointment at Mayo in minnasota for mgus. anyone out there that is also been diagnosed with this time bomb.
I am also suffering with anemia and pvc’s and a lot of pain. please let me know that I am not alone. bonne

Liked by maryy, janemichele

Recently I’ve been detected to have elevated PTH levels in my blood. Thanks to someone in the connect family was reading one of my posts about my frustration with doctors not listening and based on other things I said she directed me to this excellent link here at Mayo about Hyperparathyroidism and it sounded a lot like my symptoms. It wasn’t easy to get my PCP to do the blood work but when he did, much to his surprise and mine, not only was that number high but the other blood work was done to DX Hyperparathyroidism and all of those numbers lead to an “ electronic consultation with endocrinology “ who said that it looked like primary Hyperparathyroidism but where this story goes from here for now is secondary to what I discovered yesterday which puzzles me and perhaps complicates things but not only do I not know where any of this goes it seems that none of the doctors I’ve seen after multiple referrals know either. Surprise surprise ( Gomer Pyle. )
I knew that “ lumps “ and “ nodules “ were noticed in my cervical mri back in mid 2017 at the VA hospital in FL My PCP there ordered further testing so the lumps were biopsied and I got a phone calls from my PCP muse who announced: “ GOOD NEWS NO CANCER “ and that seemed to end that problem. Unfortunately I never asked if the lumps needed to be monitored or what were they and what else I should know.
So here we are in 2020 and I have all of these symptoms and mentioning them resulted in arguments with not just one doctor but many doctors.
Yesterday I dug out the report from 2017 and notice in the report this mention of the patient having this extra protein in my blood with ( MGUS ) in parentheses. Never has ANY of my VA doctors mention it or explain it.
Yesterday I attempted to cross reference the two conditions and it seems that researchers must have wondered the same thing and it seems to me based on what I read the lumps on my thyroid and salivary gland along with MGUS should have lead to mindful watching. But that never happened and I wasn’t even told about the MGUS
Now I’m wondering if medicine hasn’t become like Simon Says: if one doesn’t say “ May I “ your doctor tells you nothing.
Days, weeks, months, and even years go by and even now I have to fight for a real sincere assessment.
How is MALPRACTICE defined? My Dad was DX’d with multiple myeloma late in his life as he was coping with prostate cancer he decided against any aggressive treatment against the MM. He lived to 92 with all of the parts that God gave him except his tonsils as he used to say.
Isn’t it important for doctors to have a verbal record of family history? And shouldn’t that be reviewed every few years?
I think so.
Meanwhile since this is a weekend and I don’t see the VA doc who has been my PCP since 2008; what should I know about MGUS? That I may not have read on the internet?
Thanks as always!

Liked by janemichele

REPLY
@stuckonu

Recently I’ve been detected to have elevated PTH levels in my blood. Thanks to someone in the connect family was reading one of my posts about my frustration with doctors not listening and based on other things I said she directed me to this excellent link here at Mayo about Hyperparathyroidism and it sounded a lot like my symptoms. It wasn’t easy to get my PCP to do the blood work but when he did, much to his surprise and mine, not only was that number high but the other blood work was done to DX Hyperparathyroidism and all of those numbers lead to an “ electronic consultation with endocrinology “ who said that it looked like primary Hyperparathyroidism but where this story goes from here for now is secondary to what I discovered yesterday which puzzles me and perhaps complicates things but not only do I not know where any of this goes it seems that none of the doctors I’ve seen after multiple referrals know either. Surprise surprise ( Gomer Pyle. )
I knew that “ lumps “ and “ nodules “ were noticed in my cervical mri back in mid 2017 at the VA hospital in FL My PCP there ordered further testing so the lumps were biopsied and I got a phone calls from my PCP muse who announced: “ GOOD NEWS NO CANCER “ and that seemed to end that problem. Unfortunately I never asked if the lumps needed to be monitored or what were they and what else I should know.
So here we are in 2020 and I have all of these symptoms and mentioning them resulted in arguments with not just one doctor but many doctors.
Yesterday I dug out the report from 2017 and notice in the report this mention of the patient having this extra protein in my blood with ( MGUS ) in parentheses. Never has ANY of my VA doctors mention it or explain it.
Yesterday I attempted to cross reference the two conditions and it seems that researchers must have wondered the same thing and it seems to me based on what I read the lumps on my thyroid and salivary gland along with MGUS should have lead to mindful watching. But that never happened and I wasn’t even told about the MGUS
Now I’m wondering if medicine hasn’t become like Simon Says: if one doesn’t say “ May I “ your doctor tells you nothing.
Days, weeks, months, and even years go by and even now I have to fight for a real sincere assessment.
How is MALPRACTICE defined? My Dad was DX’d with multiple myeloma late in his life as he was coping with prostate cancer he decided against any aggressive treatment against the MM. He lived to 92 with all of the parts that God gave him except his tonsils as he used to say.
Isn’t it important for doctors to have a verbal record of family history? And shouldn’t that be reviewed every few years?
I think so.
Meanwhile since this is a weekend and I don’t see the VA doc who has been my PCP since 2008; what should I know about MGUS? That I may not have read on the internet?
Thanks as always!

Jump to this post

Hi @stuckonu, you'll notice that I moved your message to an existing discussion where you can connect with other members talking about MGUS. You can sort the discussion by newest to oldest to see the recent posts first.

You may also be interested in these related discussions
– MGUS and osteoporosis? https://connect.mayoclinic.org/discussion/mgus-and-osteoporosis/
– I have MGUS https://connect.mayoclinic.org/discussion/i-have-mgus/

Having discovered the possible diagnosis of MGUS in your medical record, you ask a great question of community members like @1nan @gingerw @anniemaggie @susangs @momofthree1. You asked "what should I know about MGUS that I may not have read on the internet?"

REPLY
@colleenyoung

Hi @stuckonu, you'll notice that I moved your message to an existing discussion where you can connect with other members talking about MGUS. You can sort the discussion by newest to oldest to see the recent posts first.

You may also be interested in these related discussions
– MGUS and osteoporosis? https://connect.mayoclinic.org/discussion/mgus-and-osteoporosis/
– I have MGUS https://connect.mayoclinic.org/discussion/i-have-mgus/

Having discovered the possible diagnosis of MGUS in your medical record, you ask a great question of community members like @1nan @gingerw @anniemaggie @susangs @momofthree1. You asked "what should I know about MGUS that I may not have read on the internet?"

Jump to this post

@colleenyoung Thank you for tagging me in to this. My path to MGUS was a little different, since I already had impaired kidney function and was watching calcium and protein levels levels. It was my nephrologist who saw something in the combination of lab work results, and sent me on to a hematologist oncologist. MGUS may be a precursor to something more serious, but many times it is not. It is formally diagnosed with specialized testing. @stuckonu, does that old report say which abnormal protein is being referred to? In my opinion, and yours may vary, I would ask to get a referral to a specialist, possibly hematologist-oncologist, for additional testing. It sounds like there has not been a definite diagnosis, only a reference to a possible condition, so for peace of mind please wait until there is a formal diagnosis.
Ginger

REPLY

You're handling it just fine. Get to Mayo or a large Cancer center now. They'll watch it monthly. Do your research. We went to MDAnderson in Houston.

REPLY
@gingerw

@colleenyoung Thank you for tagging me in to this. My path to MGUS was a little different, since I already had impaired kidney function and was watching calcium and protein levels levels. It was my nephrologist who saw something in the combination of lab work results, and sent me on to a hematologist oncologist. MGUS may be a precursor to something more serious, but many times it is not. It is formally diagnosed with specialized testing. @stuckonu, does that old report say which abnormal protein is being referred to? In my opinion, and yours may vary, I would ask to get a referral to a specialist, possibly hematologist-oncologist, for additional testing. It sounds like there has not been a definite diagnosis, only a reference to a possible condition, so for peace of mind please wait until there is a formal diagnosis.
Ginger

Jump to this post

Besides these ? ( I actually do not know how to refer to any of the things that are being discovered “ accidentally “ if I can use that term. A cervical MRI revealed “ lumps “ on my thyroid, cat scan of thyroid lead to biopsy, which resulted in this chapter about MGUS. No one mentioned it before or after the biopsy. And MGUS articles suggest that MGUS is more likely to be discovered while doing tests for other things.
I apologize if I’m repeating myself. That said it sure seems that everything of late is discovered “ by accident “ as I like to say. But one thing that makes everything more troubling is that no one seems to jump in and take control.

My tendency to turn people off with my long letters doesn’t help me get proper info. If I could learn some rules or tricks to say only what needs to be said maybe I can learn how to summarize things. But I admit that a racing mind is difficult to train.

I thought that I posted one of those extra long letters lamenting how I got to this place.

Today I’m on my way to Duke Radiology for a 4D cat scan.

Examples of why my letters get so long might be a byproduct of details and consequences compounded by delays in processing.

If I simply listed symptoms that I’m dealing with maybe that can help. Any thoughts on that idea?

SOU

REPLY
@stuckonu

Besides these ? ( I actually do not know how to refer to any of the things that are being discovered “ accidentally “ if I can use that term. A cervical MRI revealed “ lumps “ on my thyroid, cat scan of thyroid lead to biopsy, which resulted in this chapter about MGUS. No one mentioned it before or after the biopsy. And MGUS articles suggest that MGUS is more likely to be discovered while doing tests for other things.
I apologize if I’m repeating myself. That said it sure seems that everything of late is discovered “ by accident “ as I like to say. But one thing that makes everything more troubling is that no one seems to jump in and take control.

My tendency to turn people off with my long letters doesn’t help me get proper info. If I could learn some rules or tricks to say only what needs to be said maybe I can learn how to summarize things. But I admit that a racing mind is difficult to train.

I thought that I posted one of those extra long letters lamenting how I got to this place.

Today I’m on my way to Duke Radiology for a 4D cat scan.

Examples of why my letters get so long might be a byproduct of details and consequences compounded by delays in processing.

If I simply listed symptoms that I’m dealing with maybe that can help. Any thoughts on that idea?

SOU

Jump to this post

@stuckonu A gentle reminder that we are not medical professionals here. We are fellow patients, caregivers, and family members. While you may feel the length of your posts turn people away, that may not be the case. If a member does not have the same experience, or cannot come up with words of support for you, it's not turning away. Perhaps if you type out a post in a word document, then go back to it to edit after stepping away, you will see places where you can trim down the post. Do that, then cut and paste into your posting space. Do you think that might work?
Many times a new health concern may be brought to light in running different tests. I think that a medical professional who is versed in one specialty may not want to take a stab at something he/she is not familiar with. They might or might not feel the new item is something to be investigated.
I hope your scan today results in easing some of your concerns.
Ginger

Liked by stuckonu

REPLY

And one of my best replies was victim of circumstance common these days….the annoying spinning circle inform the user: “ you think you’re seeing a spinning circle but it’s really a middle finger.” 😷⚡️🌋

REPLY

PS had I taken you advise my work wouldn’t be lost in space

REPLY
@stuckonu

PS had I taken you advise my work wouldn’t be lost in space

Jump to this post

@stuckonu, if you are experiencing technical difficulties, please send me the details in a message using this form https://connect.mayoclinic.org/support/

REPLY
@stuckonu

Recently I’ve been detected to have elevated PTH levels in my blood. Thanks to someone in the connect family was reading one of my posts about my frustration with doctors not listening and based on other things I said she directed me to this excellent link here at Mayo about Hyperparathyroidism and it sounded a lot like my symptoms. It wasn’t easy to get my PCP to do the blood work but when he did, much to his surprise and mine, not only was that number high but the other blood work was done to DX Hyperparathyroidism and all of those numbers lead to an “ electronic consultation with endocrinology “ who said that it looked like primary Hyperparathyroidism but where this story goes from here for now is secondary to what I discovered yesterday which puzzles me and perhaps complicates things but not only do I not know where any of this goes it seems that none of the doctors I’ve seen after multiple referrals know either. Surprise surprise ( Gomer Pyle. )
I knew that “ lumps “ and “ nodules “ were noticed in my cervical mri back in mid 2017 at the VA hospital in FL My PCP there ordered further testing so the lumps were biopsied and I got a phone calls from my PCP muse who announced: “ GOOD NEWS NO CANCER “ and that seemed to end that problem. Unfortunately I never asked if the lumps needed to be monitored or what were they and what else I should know.
So here we are in 2020 and I have all of these symptoms and mentioning them resulted in arguments with not just one doctor but many doctors.
Yesterday I dug out the report from 2017 and notice in the report this mention of the patient having this extra protein in my blood with ( MGUS ) in parentheses. Never has ANY of my VA doctors mention it or explain it.
Yesterday I attempted to cross reference the two conditions and it seems that researchers must have wondered the same thing and it seems to me based on what I read the lumps on my thyroid and salivary gland along with MGUS should have lead to mindful watching. But that never happened and I wasn’t even told about the MGUS
Now I’m wondering if medicine hasn’t become like Simon Says: if one doesn’t say “ May I “ your doctor tells you nothing.
Days, weeks, months, and even years go by and even now I have to fight for a real sincere assessment.
How is MALPRACTICE defined? My Dad was DX’d with multiple myeloma late in his life as he was coping with prostate cancer he decided against any aggressive treatment against the MM. He lived to 92 with all of the parts that God gave him except his tonsils as he used to say.
Isn’t it important for doctors to have a verbal record of family history? And shouldn’t that be reviewed every few years?
I think so.
Meanwhile since this is a weekend and I don’t see the VA doc who has been my PCP since 2008; what should I know about MGUS? That I may not have read on the internet?
Thanks as always!

Jump to this post

Hello @stuckonu

As it has been a while since you last posted I was wondering how you were doing? Have you seen an endocrinologist about the hypoparathyroidism? Was a treatment suggested for this disorder?

REPLY
@hopeful33250

Hello @stuckonu

As it has been a while since you last posted I was wondering how you were doing? Have you seen an endocrinologist about the hypoparathyroidism? Was a treatment suggested for this disorder?

Jump to this post

Hi T, I’ve seen 2 Endocrinologist nothing new except how it’s playing on my mind. My therapist has twisted the narrative all things together have caused me to spin out of control.
The support I need has abandoned me… too many problems I think which interestingly cause more trouble.
After vegetating inside for a few days I’m telling myself to get out for a walk when it warms up. I need to push through the chest pains and throat closing and 2 hours of sleep and imagine another time and hope it’s not a walk and cry session.
Thanks for asking

REPLY
@colleenyoung

@stuckonu, if you are experiencing technical difficulties, please send me the details in a message using this form https://connect.mayoclinic.org/support/

Jump to this post

Thanks C, my brain is overwhelmed with negativity so I can’t think straight although I’ve written some amazing poetry but reading it only reminds me of someone who is fading away

REPLY
@stuckonu

Hi T, I’ve seen 2 Endocrinologist nothing new except how it’s playing on my mind. My therapist has twisted the narrative all things together have caused me to spin out of control.
The support I need has abandoned me… too many problems I think which interestingly cause more trouble.
After vegetating inside for a few days I’m telling myself to get out for a walk when it warms up. I need to push through the chest pains and throat closing and 2 hours of sleep and imagine another time and hope it’s not a walk and cry session.
Thanks for asking

Jump to this post

@stuckonu Yes! go for a walk when it warms up. Focus on the colors around you, the air, and I hope the chest pains and throat closing will subside. It's not easy to step up and say "I need help" but that is what your words seem to say to me. Is there anyone else besides your therapist that you can turn to for face-to-face talking, and sorting out your concerns?
I hope you will let us know how your day goes.
Ginger

REPLY
@stuckonu

Hi T, I’ve seen 2 Endocrinologist nothing new except how it’s playing on my mind. My therapist has twisted the narrative all things together have caused me to spin out of control.
The support I need has abandoned me… too many problems I think which interestingly cause more trouble.
After vegetating inside for a few days I’m telling myself to get out for a walk when it warms up. I need to push through the chest pains and throat closing and 2 hours of sleep and imagine another time and hope it’s not a walk and cry session.
Thanks for asking

Jump to this post

Hello @stuckonu,

I am sorry to read that you are going through a difficult time right now. I am glad that you posted an update. As I looked at your posts I see there was a time when you posted a lot in the Gratitude discussion group. Maybe you could look back over those posts and see if they could encourage you right now.

Here is the link to that discussion, https://connect.mayoclinic.org/discussion/gratitude-discussion-group/.

Will you consider posting one thing you are grateful for today?

REPLY
@hopeful33250

Hello @stuckonu,

I am sorry to read that you are going through a difficult time right now. I am glad that you posted an update. As I looked at your posts I see there was a time when you posted a lot in the Gratitude discussion group. Maybe you could look back over those posts and see if they could encourage you right now.

Here is the link to that discussion, https://connect.mayoclinic.org/discussion/gratitude-discussion-group/.

Will you consider posting one thing you are grateful for today?

Jump to this post

Hello @stuckonu. I see Teresa is there for you and I really can’t improve on what she says. The only thing that I feel doctors sometimes miss is when the stress of all this navigation tends to cause a chemical imbalance that can lead to a very treatable depression. Have you ever had experience with this or have any of your professionals talked with you about an evaluation? Nancy

REPLY
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