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Never Late
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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I appreciate your reply and I am trying to get my team of docs on the same page. As a retired soldier, I suffered quite a bit of head trauma so my migraines are horrible and the blackouts/seizures are back with a vengeance. I take a boat load of meds; however, my endocrinologist is working on removing several and adding one.
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6 ReactionsHello @theshewolf1 and welcome to Mayo Connect!
I am glad that @rosemarya's post was helpful to you. It sounds like you deal with a lot of different problems related to the closed head injuries you received while in the military.
Here are some other Connect conversations that you might find helpful, just click on the link and you can read and respond to the posts of other Members,
https://connect.mayoclinic.org/discussion/help-help-help/
https://connect.mayoclinic.org/discussion/adult-life-after-a-tbi/
We also have a conversation on Connect about how to approach a new specialist in the most effective way. While it addresses visiting a new specialist, I think it is a helpful guide for any doctor's appointment. Here is a link to that discussion,
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?utm_campaign=search@theshewolf1, What is the worst symptom that you are trying to get help with?
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3 ReactionsHi again, @stuckonu
I'm not sure that you answered my question about reading the link about hyperparathyroidism. Did you read it? Did you see any other symptoms other than the low Vit D level that you could relate to?
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3 ReactionsHi Rosemary, thanks for joining in and contributing your suggestions and thoughts. I’ve been a journal writer since my 20s before, in fact most people were familiar with the word journal and journaling in any event I know that your suggestion is a good one but it takes two; meaning that the doctor needs to value what you’re doing and listen if both of those things don’t happen then I’m not sure what you wind up with. I know that with my VA doctor I often find that none of what’s written down gets discussed.
As far as my remembering details of experiences I can tell that I think that there is a name for the way that I remember things I don’t remember everything thank god but what I do remember usually has way more details than anyone else remembers. It’s not “ photographic “ and it’s not what Mary Lou Henner has called H-SAM
In any event I can tell you this which is interesting IMHO: my private PCP doctor listened really well and when I told him that I could show him how to actually see something that wasn’t there. He was very fascinated. So I set up the demonstration and I could tell that he was blown away. It wasn’t magic or slight of hand it was science and in a way the human bodies way of fooling us.
Over time I think that he was no longer entertained he was something. I actually thought it was jealousy because I knew all of these things that he didn’t know nor did he know anyone who knew the same things. It’s gotten really bad because he can’t answer my questions nor is he interested in my suggestions.
I would LOVE to find a doctor like a few that I’ve had over the years. My favorite one died unexpectedly and it’s so difficult for me to just talk about him or even mention his name without choking up.
You are on to something if you already do what you suggested to me. If your Docs accept what you are doing you are a lucky person especially if you are a transplant person!
Thank you so much a God be with you! Sounds like she already is!
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4 ReactionsHi T, so in all honesty I did not read the link you post on the first go around; now I read it and it shouldn’t be a surprise to you since you seem very insightful and perhaps you possess those qualities that I wish that I could find in a doctor.
Maybe the next thing to do is follow the suggestions on the link which would mean planning a trip to one of the Mayo Clinic’s or maybe to one in particular. I’m certainly willing to do that. But going back to some of my other posts about finding a doctor or hospital that first of all takes the low D seriously. I now live in the Raleigh-Durham area which is often called the research triangle. They boast about having some of the best most progressive ground breaking doctors and facilities. So why has it been so difficult getting a return call?
To go over all of my efforts and attempt to COMMUNICATE with any of my doctors has been maddening. I wonder if I can get a call back from the clinic listed in your link. I’m not asking for a freebie, over the phone DX I’d just like to find out before hand what exactly they would like to see. The VA facilities do not even communicate with each other so my records are all over the place and one of the things that I have been repeating over and over again including yesterday when I said to the private pcp: “ my concern, dare I say FEAR , is that I’ve been complaining about these symptoms for over a year and we do not know how long I’ve been D deficient because it was only a year ago ( almost to the day that the Florida VA did the blood work and they were so concerned that they asked me to return the next day The test were done again and they were the same. “ How long have I been this way and what if damage has resulted from a cavalier attitude be every facility and doctor? I still do not feel/think/see any provider regrouping. It seems like your goal is to get my D level to a normal range but no one knows how long it’s been going on. I’ve had this incredible memory and now stress bombards me with brain fog and blurred vision. My shrink actually laughed at me because all of the tests that they’ve done for vision problems come back normal so he told me this: “ honestly I think it’s all in your head and I’m afraid to tell you that I think you are pre-dementia and I’ve change your records and ordered competency tests. He communicated this to my private pcp ( my shrink is a VA psychiatrist ) the competency test was done last Friday. The nurse he administered the test was making faces as I answered all of the oral questions but after she read what I wrote down when she asked me to write a sentence was amazement! When the doc came in he said” not only did you hit the ball out of the park you knocked the cover off of the ball “ but he’s still dismissing much of what I tell him and even show him.
I’m admiring that this treatment or lack there of only makes matters worse.
The shrink actually called the suicide help line and they sent police to my Moms in Fl and to my house in NC and to make the story more interesting I was in the ER for the fourth time and second time in two days. Not for suicidal thought but because of killer stomach pains. The nurse warned me that if the cops decided to haul me off the the psych hospital there was nothing they could do, they’d need to release me. I lucked out and the officer who interviewed me was a Veteran. He informed me that the call is subjective and if the officer doesn’t want to deal with you off you go for up to a 72 hour hold. My officer asked me similar questions to the competency test and deemed me non-suicidal. 5 hours later I was admired and was at a new Cleveland clinic in a new level of wards, one below ICU but not regular ward. After reading everything I could find about low D it sounded like it was possible that I was there because of that. After 4 days the doc came in and suggested exploratory surgery. My nurse who was standing behind the doctor was shaking her head NO!!! So I said no and was told that they thought that I had a small bowel obstruction but want to go in to look around. My nurse said that she knew me better than the doc and she knew all of my tests and said it wasn’t clear so that was why they want to do exploratory which she said is always risky especially around the digestive system.
Thank you for that link and your help. Like my nurse I think people here listen better than many doctors. I need to find an endo here or travel to Mayo.
Any other feedback from anyone is welcome!!!
GRATEFULLY THANKFUL!
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3 Reactions@stuckonu I don't really know how IU translates to mg but after having a vitamin D test showing that my D was borderline low my PCP prescribed vitamin D2 50,000IU (ERGO). I checked with my transplant department and they said it was fine. I am only to take it once a week. Just now it occurred to me though, isn't D3 what a person is supposed to take to supplement calcium?
JK
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3 ReactionsHey T to answer your question about the worst symptom OMG!
Do I only get one?
I won’t drag this out I just want to say that over the year since the low D was detected I keep thinking about watching and experiencing major changes and actually told my doctors “ you would think that I was making a big deal about a splinter in my little finger. My fear I believe is happening which is this: over time things get worse and some morph into other things. Some new things pop up and some old things just get worse and worse. I’ve actually though that I’m fading away
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1 Reaction@theshewolf1, I think that understand what you are saying about trying to get all of your docs on the same page. In a perfect world that would happen without you having to intervene, However in today's world, with all of the complex tests and medical medical records, there can be an overload of medical information to be discussed in a relatively short office visit. That is why the list has served me well. It has even served me well at most of my doctor visits. If you and your endocrinologist are working to remove and to add medications, you might find it helpful to record any related symptoms that you observe. Then share with the endocrinologist next visit.
Another thing that has been a big hit with a cardiologist that I was referred to, was when I took a list of questions that I had written on a piece of paper. When the attending nurse saw them, she asked for them and then gave them to the doctor before he came in to see me. Would you believe that he read them before he came in to see me, and he answered each question for me! He is my choice of a cardiologist if I ever need one!
I really hope that you find some relief from what you are suffering as a result of the head trauma.
Has anyone looked at the list of your medications? Would you consider asking the endocroninologist to take a look to be sure that they are safe to use in combination?
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6 ReactionsJk, 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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2 ReactionsMy 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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