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1 day ago · 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…”

Sat, Jan 4 5:17am · How to get accurate information and ways to get answers from docs? in Just Want to Talk

Thanks Ginger for sharing your thoughts and experiences.
I often feel that my long posts turn people off here and elsewhere.
Moreover, if one thinks about it isn’t it a little like 10 or 15 minute doctor appointments; like shorthand examinations. Think of your favorite book available in shorthand Gone With The Wind might have a secondary, metaphorical meaning.
I would like to present my theory on the The Rise of Attention Deficit Disorder. It seemed obvious to me that there is a cause and reason for the number of kids that compared to other generations seems to be epidemic.

Sat, Jan 4 5:01am · How to get accurate information and ways to get answers from docs? in Just Want to Talk

I have a few thoughts but number one is how your words:” I’m not a doctor “ are words that I found myself say a lot of late; so much so that now I’ve added : “ I know I say this a lot: ‘ I’m not a doctor but….’ “ I call that “ Noticing what I notice “
Honestly I love that saying but in the vein of Noticing what you NOTICE “ results in the people I say that to taking offense at it which makes me wonder what they are noticing by hearing me say that to them. And for the record I’ve said those words to several doctors over the last few years and immediately they show an attitude. Why not ask me “ what do you mean by that?” But that opens up space for a dialogue which is not what they want. In fact I also noticed that many doctors now answer questions like politicians do which is to say they don’t answer your question.
Maybe the one exception to this observation is when it comes to delivering bad news which ironically they seem to do easily devoid of any emotion. Just my humble opinion and observation.

Fri, Jan 3 6:29am · How to get accurate information and ways to get answers from docs? in Just Want to Talk

TY Ginger for answering, I’ve really been struggling with anger directed at the doctors to the point of saying exactly what’s on my mind which they are not used to nor thrilled about to hear. Maybe this ironically shows that they are like most people who do not like feedback that is critical in someway about things that they do. ( I’m writing a performance art piece with this perception/opinion as the subject )
As far as your question goes the answer is probably not for a couple of reasons. 1 most of my appointments are often late so fasting til 2 pm for instance takes more will power than I can muster especially since many days I’m running on 1 hour of sleep per night. < on one hour sleep and I have boundless energy until I hit the wall and then I immediately look for a place to crash; not good when driving >
I do not know if this is part of the parathyroid hormone number ( high in all three blood tests over a one month period of time ) because none of the doctors know for sure and although they don’t say :” I don’t know the answer to that question ) it’s one of those “ streetwise “ things that suggests that he’s just covering his butt so he doesn’t wind up with egg on his face. { not sure if anyone picked up on the mixed metaphors which suggests that their butt and face are one and the same thing] ( sorry if that offends anyone ) maybe you can guess what I say to their face ( butt ). They see you but don’t admit that they don’t know anything about what you’re going through. ( someone here must have recognized in these epic posts that maybe it was Hyperparathyroidism I haven’t figured out who exactly that was but I would like to talk with someone who knows for sure. Calls to Mayo and specially the Endocrinology dept to ask about the fasting before the blood test results in the same response : “ we do not discuss medical questions and get a referral to be seen by us” this is why I asked if any doctors or medical specialists participate here. I will check out the link you gave to me in your reply.
Something I noticed over the last year or so which is about the time that based on what I read in the Mayo publication that this hyperparathyroid thing started effecting major changes in my daily life; I noticed one doctor who was seeing me on a follow up reaching for the door handle after reading what the nurse wrote on the notes he read before coming in the room. I told the nurse that the pain level for the reason I was seeing this “ specialist “ for a strange pain I was getting in my hip was ZERO I thought about lying figuring that the truth might suggest that his RX for two drugs ( Meloxican and Percocet ) did the trick so I was fixed. He was not thrilled that I had more questions and literally had his hand on the door the whole time he was in the room with me. Since then I actually found out that many doctors are given a specific period of time for their appointment. In the case of the ENT doctor his appointments are 10 or 20 minutes. Do you think the patients are informed that they have 10 minutes and the doctor will “ wrap up “ as quickly as possible. Turned out that the same day I saw doctor “ hand on the door nob “ the pain returned as an 8. His office stated that I needed to start over because my case was closed so they would not write anymore scripts. Health care has become a racket. How can anyone involved in this profession defend their methods, rules, and practices?
I’m sorry that I go on like this in my stream of consciousness style of writing but that’s my style of ART that I do. I think I mentioned somewhere that ART IS my avocation and was fortunate enough to be in places that appreciated the avant-garde so I “made a living “ That said I’m aware that most HB’s consider my writing and other ART projects like a run~on~sentence. All is good however knowing that everyone likes what they like so that’s that so to speak. For those here who respond I want to thank you for foraging through my dumpster. < VBG >

Dec 29, 2019 · How to get accurate information and ways to get answers from docs? in Just Want to Talk

Do doctors or specialist ever comment in/on connect?

If not I’m curious about getting specific/accurate information about a blood test and results that vary what seems like a significant amount in one month period of time.

I discovered here about Hyperparathyroidism which I had never heard of until someone here suggested that I read the article here on Mayo.

That said, it is almost a joke trying to get tested and to get straight answers about the condition as well as the tests. If I could record all that has occurred since I read the article and tried to be tested.

If nothing else I read in the article here that some or all of the blood work should be done fasting. None of my tests have been done fasting and the push back that I get just mentioning it is crazy. I thought that perhaps the reason why my blood work is all over the place is because each time it’s been taken has been late in the day. None of the doctors were interested in previous tests. The tests have been done 3 time in one month. PTH is always high but that test alone had one doc call it moderate and another calling it significant.
One doc said we want to know why it’s high, the endocrinologist did an ultrasound and reported to me that where there once was two nodules no there appears to be more but that an ultrasound can not determine if any of them are the gland or just benign masses. That said the hormone is high.
Even my Vit D has varied a lot in one month; going down while taking 50,000 a week.
Lastly no one who is listed including Mayo will talk over the phone unless I’m referred.
Does anyone know definitively if the test needs to be done fasting and is it possible to have radical swings in the chemistry they are looking at to determine a plan going forward.

Dec 27, 2019 · Neuropathy and depression and anxiety in Neuropathy

Thanks John, I think I get what you mean about reply vs start a discussion.
I will read the link that you posted. I’m pretty sure a few other mentors and volunteers have posted the same link. I don’t know for sure why it doesn’t stick in my brain except perhaps it’s because something else is causing brain freeze ( my term for something I’m experiencing more and more often these days and it’s near impossible to get anyone to listen.

Happy Holidays to you also