Ok...NOW I'm fired up....

[flutterbee]

Just got my copy of my medical records from my neurologist....the guy I liked (note that - past tense) a lot.

Some of the things in there just blow my mind. They have to be made up because they are completely inaccurate and I know I didn't give him that false information. There are several things that fit that category in his records. And another thing, at my last appointment he stated in the letter to my GP that I have been 'doing well' since my last appointment. That's interesting because he didn't ask how I had been doing; he went straight to the EMG test. And had he asked he would know that I, in fact, have not been doing well.

So, I'm firing off a letter. You know, it's hard enough to get a correct diagnosis when you have something that seems to be anything but obvious. When the doctors can't even take down a correct history, how can I ever expect to get diagnosis'd?

I'm so freakin' mad right now.

 

[WhymeMom?]

Just like difficult children, docs hear what they want.....Fire at will......a letter I mean.

 

[meowbunny]

Go get him! HUGS

 

[Lothlorien]

I can't tell you how many times I see innacurate and incomplete charts come through. It's good that you get your records. Sometimes, the docs don't dictate for hours later and they forgot half the stuff because they don't take notes. Others don't dictate anything at all. I worked for one doctor in the past that we had to find out things that he did by looking at the billing sheet, because he dictated NOTHING.

 

[Hound dog]

Oh, I would be positively LIVID!

It's bad enough that every new doctor or specialist you see requires you to fill out a history form in the waiting room, only to have the medical assistant ask you again in the exam room, and then the doctor himself asks you once again your history. Last time that happened I asked him what the f-ing point of all that history taking was if he wasn't going to take 5 mins of his time to actually read it before seeing me??

And I'd demand it be corrected. And from now on I'd make sure I did periodic checks to be certain information is being recorded accurately into your record.

No excuse is good enough.

((hugs))

 

[flutterbee]

This is by no means all of the errors, but this is the one that threw me over the edge (and my response):

The statements: Persons with organic brain disease often do not realize they have memory loss and she was very cognizant of her problems and these may just be stress-related. She recently had to foreclose on her house and she and her mother share a small apartment.

My mother and stepfather, happily married for almost 24 years, reside in their own home in German Village where they have lived since 2002. My house did, in fact, foreclose November 28, 2007, and my children and I have been living in a 1,600 square foot, single family home with a large yard in a well-maintained and established neighborhood since December 1, 2007. Further, I am completely cognizant of the difference between feeling ‘scattered’ because of stress and being unable to remember in what order to perform everyday tasks.

My mom and I share a small apartment??? Where did he come up with that??? And that my cognitive problems are stress-related... that's no better than blaming it on depression. Like I can't tell the freaking difference. AND, by the way, I don't always know that I don't remember. Like when my son tells me something and then tells me it's the 5th time he's told me and it's like I'm hearing it for the first time.

I'm telling ya....sometimes I think it's really good that I don't own a gun.

 

[Hound dog]

AND, by the way, I don't always know that I don't remember. Like when my son tells me something and then tells me it's the 5th time he's told me and it's like I'm hearing it for the first time.

Welcome to my world. I've had that trouble since the brain injury, although thankfully mine seems to have lessened with time. At least it has improved.

doctor needs to do his dictation right after each patient. Orrrrrr maybe his transcriber got it mixed up. Possible.

 

[Sara PA]

Only twice have I seen our medical records and twice they were way wrong. My son refused to see his first psychiatrist ever again once he read the discharge report she wrote after his phos stay. Besides getting much of my son's behavior issues all wrong (the ole parent-child relationship thing got much of the blame which made him just irrate) she had too many grandfathers in the mix. Most of family history was dead wrong.

But I can't top the living-with-your-mother-story. That's incredible. And just plain frightening.

 

[Wiped Out]

How absolutely horrible is that? I would be furious!

 

[witzend]

I don't know that I would write your doctor a letter. I would ask him to add notes of correction - written by you - to your file. If you write him an angry letter, he'll just say you're imbalanced and depressed.

I've heard a lot of "you aren't suffering pain, you have depression. Why don't you get out more often, or take up a hobby?" from doctors and neurologists. I absolutely abhor that commercial for that medication that promises to treat your pain and your depression! I'm in pain 24/7, of course I'm not happy go lucky!

The worst was a neurologist who has the same type of muscular dystrophy as I do. It's well documented that about 40% of people with our disease have constant chronic pain. It's generally agreed that the disease doesn't cause the pain, but the pain is a result of not being able to move and go about our daily tasks using the proper muscles therefore overusing the wrong muscles. Dr. Ego told me I had to be depressed, because he doesn't have any pain. I sent him copies of studies proving I was right. What a waste of a stamp.

I was beyond furious! What a waste of time and money, not to mention I'm not terribly fond of being told that there's nothing wrong with me except I spend too much time feeling sorry for myself. Then when you react with anger and disappointment, you are seeming to fulfill their diagnosis. "See? You're angry and depressed. See a therapist."

About 5 years later, Dr. Ego married. There is a prenatal DNA test that can be taken to determine if your child carries this gene. His wife (whom I have met several times at conferences and never told this story to) told me that she wanted to have the prenatal testing done. At the least she wanted to make an informed decision about the child, and to be able to help her child from the get-go if it came about that her child was born with our disease.

Now, I have to tell you, that most of us are diagnosis'd at about age 10 - 12 because of another injury or because another family member has it and there are subtle signs. There isn't a definitive progress to this disease that you can count on, no one - even in the same family - gets ill at the same rate as anyone else. About 5% of us have "severe early onset" FSH MD. Dr. Ego's son did. By the time of 18 months, he began to be unable to hold himself upright, and as soon as he could talk he would tell his parents that he was in pain every day. Mrs. Dr. Ego actually told me that she would never have given birth to a child with the disease if she knew then what she knows now.

Mrs. Dr. Ego used to call me from time to time to ask advice. I asked her why she didn't get the testing done and educate herself as to what life for her child could be like? She told me, and I quote, "My husband told me it was no big deal. We didn't know that there could be pain, or that it could come on this early."

HELLO! I sent him studies 5 years earlier! The studies all showed that the earlier the onset, the worse the pain. He's an egomaniac who felt that he was the gold standard and could judge everyone else by his abilities. I never told her what I knew. But I stopped taking her calls. It was too much to listen to her cry about her son, knowing what I know.

 

[flutterbee]

That statement I quoted came from the letter he sent to my GP about my appointment with him. So, not only is he inaccurate, he's disseminating inaccurate information to others. Like I said, that's not the only one. Another one is that I stated that the parasthesis in my fingers has 'greatly lessened'. Not so. Another is that I fell asleep spontaneously during the EEG (didn't sleep at all during the test).

And there's more. I'm so upset.

 

[TerryJ2]

Aiyiyaiyai!!! I am so sorry. Scary stuff. And aggravating as h*ll.

 

[susiestar]

i would also be aggravated. Insist that the records be dictated in your presence in the future (if you can). I would let the doctor know the records are grievously incorrect and you would like to have them corrected.

I am sorry they screwed it up so badly. been there done that.

Susie

 

[flutterbee]

Witz -

I've thought about sounding angry and have sent a copy of the letter to my mom to proof before I mail it. I want to sound as objective as possible. I have noted in the letter (first paragraph) that there are inaccuracies in my records that need to be corrected. I request that the letter be made part of my permanent patient file.

When I did the heel to toe walking I fell completely over at least 3 times. I was able to catch myself on the floor so I didn't fall. Because I was able to catch myself and used "very elaborate postures in attempts to maintain her balance" he thinks my balance is "fine".

Granted, my balance issues aren't my biggest and some days they seem almost nonexistent (all this stuff is worse with fatigue)...and maybe it's some kind of neurological wording....maybe he's used to seeing people that just fall over....but I don't think that having to catch yourself with your hands on the floor constitutes an ok balance issue. I'm very self-conscious of it and worry that people are going to think I'm drunk because that's how it looks.

Sigh....

 

[trinityroyal]

i would also be aggravated. Insist that the records be dictated in your presence in the future (if you can). I would let the doctor know the records are grievously incorrect and you would like to have them corrected.

I am sorry they screwed it up so badly. been there done that.

Susie

Heather, I don't know if it's possible to do what Susie suggests, but I highly recommend it if you can.

Tangential, but related...I had a meeting with a lawyer last week. We discussed everything, and then he dictated a letter to his assistant while I was sitting there. Despite the fact that he had extensive notes from his meeting right in front of him, he made about 12 errors in the dictation that I caught and corrected. I also requested a proof copy of the letter, and found 2 more mistakes.

Dictation is a very unreliable process, even when the doctor is diligent about doing it right away.

You have every right to be livid. I like Witz's suggestion of annotating the note directly if possible. That way the correct information is right there, and people won't introduce any further errors trying to put the doctor's original letter and your corrections together.

What a mess!

Trinity

 

[witzend]

My experience is that the most important thing is to get accurate information into the file that the next doctor will read, because he will send it on. I find that I do better with this type of thing when I leave the "letter" part as more of a "cover letter".

"Dear Dr. Idiot:

I was concerned with the incomplete and sometimes incorrect information in my file. Attached please find a list of additions and corrections. Thank you for your time and attention to this matter."


Then do a bullet list and edit, edit, edit. I wouldn't even refer to the words he used. I would say "Regaring notes of my visit 3/8/08" or "Regarding your letter of 4/9/08 paragraph two." then bullet list the correction. I wouldn't use his words. It's not what he sees because he's a t-u-r-d. It's what the next doctor sees in his file that is important.

 

[flutterbee]

Ok, Trinity, I had to look up the word "tangential".

You and Susie are right. I didn't get office notes. It was requested in the request for my records, but all I got were letters to my GP and the lab work, MRA results, EEG Report. I'm wondering if there aren't any other notes other than the forms I filled out at my first appointment and the letters. Maybe the letters to my GP take the place of office notes. And he took NO notes at my last appointment and very, very minimal notes at my first. Guess HIS memory isn't as good as he thought.

My GP has a computer in each patient room. Her files are electronic. While I'm sitting there she types her notes and reads them back to me for accuracy. She also has all of my medications listed and can add or remove them with just a click. All letters from my consult doctors are scanned right into the file so everything is right there. It's a much better process. There is no dictation, no lag time, no third person to mix up the notes. Very clean. Hopefully, they will all be moving to that eventually.

 

[flutterbee]

Witz -

Very good point. Thanks for the tip. I'll be changing the format. I've already revised it a half dozen times. I typed it out then walked away for a while to cool down. Then edit, edit, edit. I'm pretty happy with the wording now so I'll just change the format (although I'll probably make more wording changes in the morning if I know me!).

Thanks!

 

[Hound dog]

Heather

This is awful. But with all of these mistakes, I'm wondering if this is holding up your diagnosis process. I mean, how can neuro get an accurate diagnosis when he doesn't even have the correct history or office visit, and testing information to go by??

As for the EEG. That might not be his fault at all. I had one years ago. The EEG technician swore I slept thru the whole thing til I repeated the long conversation she'd had with another tech during the procedure word for word almost. I can't sleep unless it's dark and quiet. Sound of voices and forget it. Won't happen. Seems to some of them if you're relaxed and lay still you have to be asleep. sheesh

The fact that I was awake actually changed the results of my EEG because according to her the waves showed I had to be sleeping.

My cardio does the computer in the room thing. I love it. It might put transcriptionists out of a job (and I have several friends who are) but doctor putting it right in with you there to correct is tons more accurate. Many hospitals are using the same thing too.

 

[flutterbee]

I understand that the EEG report is including notes from the tech. Luckily for me, she placed a phone call to reschedule a mammogram because she had missed her appointment the day before. So, I have something to prove that I was awake. It did note in the report that "no abnormal activation occurs during sleep or at the time of arousal", so I wonder if the fact that I didn't sleep will change anything.

I'm pretty sure these mistakes along with doctors' refusal to listen is holding up my diagnosis. They just seem disinterested.