MGUS: Please, let me know I not alone

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

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

stuckonu | @stuckonu | Mar 10, 2020

In reply to @hopeful33250 "Hello @stuckonu, I am sorry to read that you are going through a difficult time right..." + (show)

So Teresa, I hired a health care profession who is very positive and send morning greetings everyday. How can one not be grateful for her presence? I even tell her often, maybe everyday! On the same theme, she had a near fatal event so I do things with and for her. I’m very grateful that I put my complaint bag aside and it makes me feel good to do it. I never forget that bag that I leave behind and I’ve already heard from many to “ fa’getta bout it “ maybe if I believed in wishes or hope I might get dementia so I can just put it away.
I’ve become very negative about the whole medical field in general and as much as people like “ sharing “ their concerns and maladies they don’t like hearing a trashing of the system that they surrender to.
So, for instance I carried the 7 page report about the biopsies done in 2017 where “ MGUS “ was mentioned on half of the pages. My VA doctor ordered follow up testing and everything came back “ negative “ Good right? But as I saw it I wanted to know why the hospital that did the biopsies never discussed, showed concern, ordered more definitive testing as: the nodules were discovered in a cervical MRI the lead to the biopsies with no mention of Hyperparathyroidism and their GOOD NEWS was NO CANCER! Also no plans going forward. I have no voice and when I told the same doctor the no one seems interested or concerned about my voice he replied: “ I resent that! “ 1 hour with him. He listen to my heart from my back. No blood work or urine test when the last test had: blood and calcium in urine, extremely low vitamin D and two other chemical in my blood suggesting Hyperparathyroidism. I’ve been taking 50,000 units of D2, every 4 days 2000 Units of D3 liquid several times a day in coffee and juice fortified with D and Calcium, but perhaps his “ RESENTMENT “ effected his behavior.
One week later my concierge doctor did the D test and reported that it’s on the low side of normal.
I wonder what DXs come and go?
One last curiosity: I did a search for most missed diagnosed illness are since two best friends suddenly passed away from misdiagnosed ALS. Pretty scary to me

Nancy, Alumna Mentor | @1nan | Mar 8, 2020

In reply to @hopeful33250 "Hello @stuckonu, I am sorry to read that you are going through a difficult time right..." + (show)

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

Teresa, Volunteer Mentor | @hopeful33250 | Mar 8, 2020

In reply to @stuckonu "Hi T, I’ve seen 2 Endocrinologist nothing new except how it’s playing on my mind. My..." + (show)

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?

Ginger, Volunteer Mentor | @gingerw | Mar 8, 2020

In reply to @stuckonu "Hi T, I’ve seen 2 Endocrinologist nothing new except how it’s playing on my mind. My..." + (show)

@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

stuckonu | @stuckonu | Mar 8, 2020

In reply to @colleenyoung "@stuckonu, if you are experiencing technical difficulties, please send me the details in a message using..." + (show)

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

stuckonu | @stuckonu | Mar 8, 2020

In reply to @hopeful33250 "Hello @stuckonu As it has been a while since you last posted I was wondering how..." + (show)

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

Teresa, Volunteer Mentor | @hopeful33250 | Mar 4, 2020

In reply to @stuckonu "Recently I’ve been detected to have elevated PTH levels in my blood. Thanks to someone in..." + (show)

@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!

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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?

Colleen Young, Connect Director | @colleenyoung | Feb 9, 2020

In reply to @stuckonu "PS had I taken you advise my work wouldn’t be lost in space" + (show)

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

stuckonu | @stuckonu | Feb 9, 2020

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

stuckonu | @stuckonu | Feb 9, 2020

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.” 😷⚡️🌋

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