Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group any way to remove a mistake from med records?

thanks craig.

that's the thing i think. i have had better experiences with doctors who just listen to what i tell them, look at the data i share with them, etc.

my retired GP tried to be oh so helpful by writing letters and sending a packet of data to any doctors he had to refer me to. but looking at the letter, so many mistakes in the letter, and use of the word discomfort over pain really wasn't helping my cause. and the data he chose to send vs that he chose not to send, really wasn't the best.

but when i can put my own packet together, and share my history, that always works out better. and i tend to be very inclusive. even telling new doctors about the fibro dx, but explaining the rest of the story, to get a complete picture.

i think you may be right jay.

my current in town rheumy made so many mistakes on his first office report (back to my GP) so i corrected the report (things like changing "psychiatrist" to "physiatrist" or changing "not taking a proton pump inhibitor for her stomach" to "taking prilosec daily since 1993". big, factually incorrect stuff. i left the opinion stuff that i could not prove, as i figured it would just devolve into an argument.

but all of this has really opened my eyes to how important it is how we report things so the doctors can get it right. now when i go to doctors visits, i write down the things i want them to know, make a copy and have them put that into my file as well. think that is turning out to be a very helpful thing.

when i started this adventure, never occurred to me how much we'd have to take control of our medical treatment.

thanks joanne.

i now have almost all of my records, went through, organized them, made a "medical resume" to summarize everything. now take the medical resume for the quick summary and my organized file for the proof with me. that's what i did when i went to philly and found it very helpful.

though he did read the GPs letter with the inaccuracies, instead of my GPs file, i switched it out for my own, a much better, more thorough representation of what has been going on all these years.

sue, aloha

i don't think you can get that old item out of your records. you have very little to no control over what a doctor writes down- like the back-ache problem.

when i got hold of thirteen/fourteen years of records ( from ssa, when i was working of disabilty claim) from four/five doctors i was shocked how little was written down...big things and little things that became big. they write defensively .

you can get your new doctors to write that you do NOT have FM. and that will be newer information in your records. diagnosis is like a committee of blind folks trying to describe a hephalump after touching one part for a half minute. i know there is such a thing as FM, but i feel it's the refuge for a lot of clueless misdiagnoses too.

best
aB

thanks ben!

will see if the new rheumy will write NOT FM.

the third rheumy did tell me to my face, "you do not have fibro" but would only write "does not have x number of tender points......", my impression is that he did not want to directly contradict rheumy #2. but maybe someone in another city who doesn't know rheumy #2 personally. plus rheumy #3 didn't dx me with anything. so maybe if someone is actually dx'ing me with something, will feel more confident in writing also what i don not have.

but i just love those terms like "discomfort" to describe our pain.

or "backache" to describe severe muscle spasms in the lower back and buttocks. i've had a "backache" before, and severe muscle spasms are not the same as sore muscles, which to me is what a backache is.

also, "myofascial pain syndrome", another one of my favorite catchall phrases. at least at my last appointment with my physiatrist, at least she had the decency to write to the GP and state that the amount of pain i had in my upper back was not consistent with "myofascial pain". turns out i had a rib subluxation compressing nerves. that would explain it. did turn out to be a simple explanation. just not something on the radar of the half dozen doctors and PTs trying to help me last year. another very important reason to try different specialties when no one seems able to help. everyone does seem so myopically focussed these days.

Hello Sue,

I would agree that it is probably difficult to get removed... if not, Seinfeld would not have had an episode dedicated to it.

Elaine medical record episode

Tim

thanks tim!

i love seinfeld, thought i'd seen every episode at least a half dozen times, no idea how i missed that one, but loved it,

thank you for the laugh.

at least i've never seen THAT in any of my charts

funny story: last time i was in my rheumy's office, had to wait 1.5 hours, so thought i'd save us all some time by looking to see what i had already given him to send to NIH and which of the tests results i had were newer. so i took my chart from the little slot at the door and started looking at things and this nurse comes along and snatches it from my hands and demands to know what exactly i think i'm doing. so i explain it, innocently. until that day i had no idea we were not allowed to look at our charts. i mean its about me, so why not? i can request the information in writing (its a law now), so why can't i see it? maybe i've been lucky that all my other doctors share everything with me so openly and honestly, i had no idea that a doctor would ever care if i looked at my chart. i really thought it was supposed to be open access to the patient, again i'll reiterate, its about me, am i not allowed to know about myself? i think we should never write anything down that we don't want someone else to see. that's the policy i use when evaluating students, be it letters of recommendation, etc. if i want to discuss a student with another faculty member, i make sure its verbally, as not to leave a paper trail. thought doctors would operate the same way. medical world really is an eye opener sometimes.

again though, thanks for the laugh!

my favorite lines were:

elaine: "they said i was difficult. why would they write THAT!"

jerry: "maybe they've gotten to know you!"

classic seinfeld! thanks again for the larf!

The best way to "remove" incorrect information from your file is to essentially create a new file. Since your GP retired and you did not have a successful appointment with the new one, can you start over and pick another new GP? If so, don't sign the release authorizing transfer of your file from the old doc to the new one. Instead, bring copies of all pertinent tests, x-rays, etc, along with a synopsis of your medical history with only confirmed diagnosis, test results and current medications. Since you need to start over with a new GP and want a new Rheumatologist, wipe the slate clean and direct their attention to the current problems - not past problems or irrelevant or incorrect information. If they ask or insist on the old file (in my experience most won't), explain that you want a fresh set of eyes to look at your situation. If they are unwilling to do this, move on, they probably are not the right doctor for you. This will not work if you have an HMO or restrictive insurance plan that requires referrals, or if you live in and restrict yourself to doctors in a very small town. I am not suggesting that you be dishonest. You can certainly verbally tell the new doctor that a doctor along the way thought you had Fibro, but that X number of doctors before and since feel that you do not (and why).

***edited to add***
My first diagnosis - by a clueless physiatrist - was "probable bone cancer" based on his interpretation of my first MRI and bone scan. That was promptly ruled out and I was diagnosed 2 weeks later with AS based on those same films - and some added tests. I have moved and changed doctors several times since then and I have never mentioned "bone cancer" to my new doctors.