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Tue, Mar 10 6:07pm · MGUS in Blood Cancers & Disorders

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

Sun, Mar 8 9:40am · MGUS in Blood Cancers & Disorders

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

Sun, Mar 8 9:36am · MGUS in Blood Cancers & Disorders

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

Sun, Feb 9 9:14am · MGUS in Blood Cancers & Disorders

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

Sun, Feb 9 9:12am · MGUS in Blood Cancers & Disorders

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.” 😷⚡️🌋

Sat, Jan 25 8:37am · MGUS in Blood Cancers & Disorders

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?


Sat, Jan 4 10:12am · MGUS in Blood Cancers & Disorders

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!

Sat, Jan 4 6:00am · How to get accurate information and ways to get answers from docs? in Just Want to Talk

JK, thanks for sharing you own thoughts and experience as well as this observation: “When you would most want to have your own doctor there, the doctor with whom you have hopefully developed a rapport, you are treated by a bunch of strangers – hospitalists “ this is an example of Notice what You Notice “ So if we have an actual book dictionary from some period which might includes all of the last century, and you look up “ hospitalist “ you will not find it in the dictionary. In fact, the spell checker here wants to correct that word and insert hospitality
It’s like “ let’s make up a word that sounds good and important “
It makes sense to me that certain discoveries need to be named but sometimes it seems that there are risks and consequences for naming things. Of course this topic IMHO can be presented as a masters thesis or doctorate dissertation and probably should be to draw attention to language.
I recently said to my therapist that HB’s ( Human Beings ) “ language our realities “. She pulled out a note book that she had tucked between her leg and the arm of the chair and wrote something down. She asked me if I had noticed that she does this a lot. Yes, I had noticed. She explained to me that she only has one other patient who says things that cause her to think. I thought that it was interesting to me that she admits to only two HB’s who say things worthy of writing down. I liked that she shared that with me. More often than not I have people say: “ I have no idea about what you just said “ I do not get upset when I hear that because I’ve heard it most of my life.
I wrote something here awhile ago about get bad grades and lots of red F’s and D’s on papers and report cards until I went to a “ progressive college “ that didn’t grade on spelling, grammar, and other traditional writing conditions. The we’re looking for substance / creativity my self esteem changed as did my grades. In a way I think this relates to medicine in this way: “ if they only listened to what’s being said…”