Never Late

Posted by stuckonu @stuckonu, Oct 29, 2019

Then, within the last week or so I was late twice: 5 minutes for my therapist 20 mins for my PCP My PCP was asked by my shrink to give me a competency test so I was his last patient. The therapist I’m seeing is puzzled about the competency test request. I did tell my therapist why I think the shrink who my therapist never met and doesn’t know only meets with me for 30 minutes at a time once every 6 months if I’m lucky more often than not it’s more like every 9 months.
It occurred to me that part of the problem with health care in general is that most doctors have little or no contact with other doctors that we see. Someone will inevitably bring up medical records and or “ notes “.
I’m already feeling anxious about my earlier post about being mindful of the length of my posts. My mind is racing attempting to imagine how to explain just what I mentioned so far.
Isn’t it at least important enough to wonder how and why a psychiatrist and a “ therapist “ LCSW don’t have any communication about a patient? As it turns out, most people that I have asked this same question to don’t think it’s so unusual at all. Remember that the shrink contacted the PCP to administered the comp test.
Based on what I know and also in part what I don’t know, I think it’s impossible to make this a short post. I do think it’s possible to break things down into several posts that will explain a few things and raise a few questions that I think are critically important in general that may shine a light on the much bigger problem of how we all got to this giant mess called “ health care “
I’ve written in my journal that I wish it was possible to wear a body camera as the police now wear to eliminate the he said, she said situations that complicate getting to the truth about what happened. Of course most individuals and professional business’s do not want to be recorded. I keep thinking of something my grandmother taught me when I was about 6 years old. She told me that “ if you tell the truth you never need to worry about remembering what you said “ I apply that saying to wearing a body camera: what is there to worry about if all one wants to do is to have a record of what is said and done?
Why did the shrink want a competency test? I’ve been complaining about a “brain fog” and other circumstances that have been happening more frequently and lasting longer.
Here is where I’m going to attempt to keep the information short.
This isn’t something that just happen for no reason. I see a reason and correlation but it doesn’t show up in any medical journals or well known illnesses so he immediately thinks that it’s signs of early onset dementia. I tell him that it’s stress related. I’m not a doctor so that theory gets tossed out.
Add to this my blood tests done about a year ago which showed extremely low Vitamin B12 and Vitamin D The VA hospital that did the test called home before I arrived back home after the test. The message was to return the call ASAP I called and was told to return the next day. 80 plus miles round trip. I asked if it could wait a week. The nurse said no because the numbers were so low that they wanted to repeat the test and make sure the test was taken correctly. I asked how low it was and all she said that in over 20 years of medical service she had never seen numbers so low. I honestly didn’t know nor do I know now how low is really low or what it means.
I was given injectable B12 and 5000 units of D3 tablets I’ve taken B12 shots before but I was never told to inject myself once a week for two months!
A year has gone by and the B12 If now “ high normal “ the D is still low after a year of making several efforts to get the D back to normal.
From what I’ve read, all of the most complained about symptoms that I’ve had for over a year now can be associated with low D including the brain fog, vision problems, digestive problems, sweating and lots more.
I don’t know where to go or who to see.

Does anyone know which specialty doctor can look at this with new eyes?

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@hopeful33250

Hello @stuckonu

You make some very good points about doctors communicating with each other. If you have a large inter-disciplinary medical center near you, like a university medical school or a Mayo facility, you will have greater communication between your different physicians as long as they are all part of the same center. Since you go to the VA, you might be able to get records from each doctor after your appointment and bring them with you to the other appointments. It might seem awkward at first, but it will be better for you in the long run.

As you are having problems with a low Vit D and a high Vit B12, have you consulted with an endocrinologist? If not, this might be a good idea.

I'm looking forward to hearing from you again. Will you post an update?

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Afternoon session < g > I was reading that article again and realized that my body was talking to me and the doctors as well. The docs listen to my body as much as they listen to me. Two years ago my back pain and joint pain moved to another level. One doc ordered a full spinal MRI and similar to last years call from the VA before I got home requesting that I call back immediately. If the phone number is not a well known VA number it’s for a specific person or dept. as this number was. It wasn’t about my spinal MRI per se it was about something else concerning picked up by the MRI it had to do with nodules on my thyroid and salivary glands. They wanted to biopsy them and they did and it wasn’t cancer so that was the end of that, however all of my PCP’s Mentioned hard swollen glands for too long to remember. They did nothing although I was told once that one thyroid blood test was always normal.
Ironies or ironies there’s been an odd history of what the VA doc calls “ anomalies “. So for instance I was being poisoned by my well water and I recall arguing with my doc constantly because he said there was nothing wrong with me except all illnesses were in my head. After a year of this arguing he calls me one day with good news/bad news They finally detected very high levels of ammonia in my blood which was making me blind and crazy as a loon. The so called “ good news “ was that he found out why it never showed up in my blood test. The VA process/protocol dictated that if liver enzymes were normal they through out the ammonia test. My question to the doc was this: if there was no ammonia test in the blood test would you not ask why not or where it was? He admitted that after a year of watching me go crazy he asked the lab and they informed him of their rules. He said he didn’t notice because he was expecting a red flag notification which never occurred because the test was never done. That may have been the first time he mentioned “ anomaly “ saying that most people with that high a level of ammonia in their blood would have it show in the enzymes.
I don’t know for sure but this has happened to me so many times I can’t say exactly. Although it may not be related I’ve always had what they call paradoxical reactions to medications Zoloft for instance should take two weeks to show effects. Within the first fifteen minutes of taking Zoloft ( on my birthday no less ) I was becoming Frankenstein’s monster and had to lock myself in my house for three days. I couldn’t answer the phone or the door or go out in public. Similar with Paxil but at least I wasn’t homicidal. But I had no appetite, my body temp dropped that my teeth were chattering and while in Fl during the summer I wore winter clothes and gloves and sat in the sun trying to stay warm. They finally told me to stop taking them when I didn’t eat for a week. I noticed in the article you posted that lithium was mentioned. I took that for a week and though I would never recover I became “ dumbfounded “ as I called it. My brain drained and I didn’t know anything I couldn’t speak.
Stress now triggers the brain fog, blurred and double vision and my pains are new and so bad I can hardly get out of bed in the am. I’m now recording it all because saying it seems to have no affect on the doctors.
My emotions are all screwed up too and guess what, all family and friends are staying away. I feel like the twin towers on 911: most people are running away. I need my hero’s like in the Army who would never leave a soldier behind. Hero’s run towards the fight everyone else runs away

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@theshewolf1

My neurologist took the sheet of paper with my questions and copied it into my medical records. My memory isn’t as good as it used to be but I am sick of others judging me and trying to tell me what to do. My life is a never- ending nightmare on some days but it doesn’t mean I am a child or be talked to like one. I have been independent since 18 so please stop treating me like I am an invalid.

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Sorry to hear about how you are treated. Read what I said about Hero’s in my last post. Sound like your experiencing that thing that happen to us when we return: everyone who wasn’t there tell you how to feel and to “ pick yourself up by your bootstraps “ if they only knew what that does to us inside maybe they’d just live you for being you! I’m here for you Twolf

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@theshewolf1

My neurologist took the sheet of paper with my questions and copied it into my medical records. My memory isn’t as good as it used to be but I am sick of others judging me and trying to tell me what to do. My life is a never- ending nightmare on some days but it doesn’t mean I am a child or be talked to like one. I have been independent since 18 so please stop treating me like I am an invalid.

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@theshewolf1 First, thank you for your service. Then, welcome to Mayo Connect, if you haven't been welcomed to our big cyber table, yet. We are a caring group who offers support and shares our experiences. I am glad you write your questions down - I do, too, and it helps me focus. You're lucky when a medical professional copies your questions! Those of us who have been through harrowing events like active duty and other examples, have to just shake our heads when people say "get over it". Our very core is changed and it takes a lot of effort to revert back to "normal", if ever.
Ginger

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@theshewolf1

My neurologist took the sheet of paper with my questions and copied it into my medical records. My memory isn’t as good as it used to be but I am sick of others judging me and trying to tell me what to do. My life is a never- ending nightmare on some days but it doesn’t mean I am a child or be talked to like one. I have been independent since 18 so please stop treating me like I am an invalid.

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@theshewolf1- I also welcome you to Mayo Connect. I have every single one of my labs results, ct scans and blood work. Anything that a doctor has in my file that I can get a hold of I have. After 22 years of lung cancer I have folders and folders. lol This way you can keelp track yourself and research any terms were not familiar to me. I became a better patient with this.
I agree, people don't stop to think how what they say can be very hurtful when they are just trying to help. Turning the question back on them might also be a tactic. Ask them how they would feel if that statement or question were aimed at them if they are seriously ill.
II was waiting in line about 22 years ago to check in with pre-op for my first lobectomy. The gal behind the desk asked who was with the gal trying to check in. The gal in the wheel chair said I'm a person and can hear you.
Maybe we all need to speak up more if walking away doesn't work. What do you think?

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@theshewolf1

My neurologist took the sheet of paper with my questions and copied it into my medical records. My memory isn’t as good as it used to be but I am sick of others judging me and trying to tell me what to do. My life is a never- ending nightmare on some days but it doesn’t mean I am a child or be talked to like one. I have been independent since 18 so please stop treating me like I am an invalid.

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@theshewolf1 I am sorry that your neurologist treated you poorly. I think many doctors start out like that and then when they figure that you are reasonably competent they tone that down. I have a pretty good rapport when it comes to that with all of my doctors.
No one loves going to the doctor, but when the doctor is dismissive or treats you like you are incompetent it's 10 times worse. If the neurologist is still treating you that way you may want to consider a different neurologist. I had to see a neurologist a few times due to episodes of confusion which turned out to be metabolic, not neurologic. He was absolutely wonderful, one of my all time favorite doctors.

Are you seeing a neurologist for memory problems? If you indicated the purpose I must have missed that somehow.
JK

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@stuckonu

Jk, I read that D2 is vegetable sourced and D3 is animal. After my hospitalization for what they said was a small bowel obstruction I decided to go back to my quasi vegetarian diet: no animal flesh which includes fish and fowl. Based on what I’ve been reading I did the wrong thing because vegetarians are none to be D deficient. I’m still in the dark because there’s no finger on the pulse.

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@stuckonu According to this article, it sounds as if D3 is superior to D2 so I am wondering why my doctor prescribed D2.
https://www.healthline.com/nutrition/vitamin-d2-vs-d3
JK

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