i did not know exactly what was in my medical records until i saw a referral from my new GP to the podiatrist today.

under patient history are various "problems" listed. one is that misdiagnosis of fibromylagia back in 2007 that has caused me so much trouble, the dx that was ruled out by a number of doctors prior, and a number since including 3 other rheumatologists now.

i'd really like to see it removed from my file once and for all.

does anyone know if this is even possible? to remove a mistake from the file? does it even matter anyway?

also, missing: hypothyroidism, blepharitis, all the various tendonitises and even the sacroiliitis for which i was treated, including bilateral cortisone injections into the SI. instead it says "backache"; i remember when one of the rheumatologists asked me about that i said, "no, more like a butt ache!" enthesopathy is on there though. i wonder who decides what goes on there and what is left off? wonder if this is a list the old GP put together? wonder if he just used some of the specialists' reports but not others? but how would he decide what to include and what to exclude? the whole thing is very odd to me.

any insight?

I'm talking from UK and NZ experience here, so hope its useful. Missing is relatively easy - you can write a summary yourself, and preferably note by every item who diagnosed, who you were under, who treated you, etc. They should include that in your notes. If you just wrote your problems it probably wouldn't be taken much notice of, but if you name docs and clinics or hospitals then it probably will.

Wrong stuff is usually much more difficult. In the UK you have the right to have a note added to anything you think is wrong, but it really depends on who is reading it if they take much notice. I'd guess that for some of the examples you have given, if you made more up to date notes of what happened after that wrong diagnosis, etc (naming docs, dates, tests, etc) then again that would be taken more seriously.

Its the judgemental stuff that is a nightmare - my file is full of doctors saying I was putting on pain, was deliberately walking funny, was playing up stiffness etc, and I have no way of challenging that.

thanks, that is helpful. even if things are done a bit differently here, think your post is full of good ideas. guess what i need to decide is how important this is. it is good that i've been getting better dx's along the way. the last rheumy said enthesopathy, the new one said spondyloarthropathy, so each dx, a bit better defined. really the only thing that was flat out wrong was the fibro. mostly its been just very cautious diagnosing, which i understand. no dx, or a very cautiously written dx is better than a mistake. mistakes tend to follow us and cause issues along the way. right after that quick fibro dx, that kept me from finding another rheumy for 15 months, try as i might. that's a long delay in the process of finding someone to help you when all your other doctors are telling you, "i can't help you, you need a rheumatologist." and you saying, "i understand, i'm trying!"

thanks, may inquire with my doctor about making these changes.

and i've been very good lately about getting all the paperwork from the various doctors, my file is pretty complete and finally organized. still need a bit more missing paperwork. then i've got documented proof. got to the point where i just felt i needed it. plus i was starting to lose track, not so much of what, but definitely of when, it's all started blurring together. so i got the notes as much for myself as anyone else.

thanks again,

They always say knowledge is power, and just knowing what is and isn't in your medical file is a huge help. It does mean that it you do see a new doc, you can take along the missing information or that added detail, or the updates that will help them interpret it better. I have a fibro sort of diagnosis at the moment, and it clearly doesn't fit, so at some point I want to lose it too. The best chance of that is to not see it as the final diagnosis, but a point of understanding along the way that has been superceded by various other findings (on examination, by your progression of clinical history, or by tests). When you get docs who just read one page of a big file and stick with that its hard, and thats where you have to point out what came later and how it developed. Good luck with it all.

I think that your medical records are only kept for seven years now. It may not matter that much anyway. It has been my experience that most doctors like a clean slate when you go to them and they rely on your history more than a prior doctor's records.

Based on my experience, doubtful.

I inquired about a diagnosis as "pegged" by a PA at a GP's office. I was told it could not be stricken from the record, only amended. Refer to the HIPPA information/disclosure that the provider provided to you. There might be some discretion on the medical provider's part regarding the willingness to permit the amendment, but I can't recall. However, it very well may be, like a cow, once you are branded you are branded.

There are state parameters/mandates/laws regarding how long medical records must be kept (in most states anyway). Seven years seems common, but is not universal. Also, if the medical provider wishes to archive those records beyond the state's parameters, they may. I was able to retrieve records from 15 years ago (made the request in 2009 regarding records from 1994) from a hospital.

Hi Sue

I cannot get anything removed, but I can like cemc says, add my own comments and evidence to anything I do not agree with

What I can tell you is this, doctors in general, like Farinelli says, rarely look back past the last seven years.

Also, another thing I have noticed the more new things that are added to my records the less old stuff is raised. Not that I wish any more illness on you but if you do report every symptom, the list becomes very long they do not want to add to it by looking at things you may or may not have had

Love Joanne

I get copies of all of my test results, all of my diagnoses, and all of my Xrays, MRI's, CT-scans, bone scans, etc. This because my dad's records got so screwed up in the 80's that I just don't trust med records people. Nothing personal if anyone here is a med records person.

i do think you are correct: as soon as i got the fibro dx, it took another 15 months of trying very hard before another rheumy in town would even consider seeing me. i even called our local arthritis foundation office for help. even they told me that since i had fibro.......i tried to tell them i didn't, that a lot of other doctors had ruled it out along the way, but even the arthritis foundation told me that if a rheumy dx'ed me with it, i MUST have it, that the other doctors and i were wrong. but once i saw another rheumy finally, though he didn't dx me with anything, and wouldn't disagree with the other rheumy on paper writing "does not have fibro", did write "does not have the _ # of tenderpoints (that would indicate fibro) and did show me how gently a doctor is supposed to press to determine tenderpoints. then after that, could see another rheumy about 8 months later. his reports say enthesopathy, so slowly the records got better. maybe just seeing fibro staring me in the face is just a personal issue i have to get over. i also feel it does a disservice to those who have this equally debilitating disease of fibro.

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.

thanks!

that's good advice. that's what happened when i moved from virginia to NY state, not exactly on purpose, but i moved, had about 3 good years, and by the time things got involved here, that history from virginia was so old, no one cared too much. i got all those all records and have passed on the things that help prove the things that really happened: like the torn rotator cuff or the cortisone injection into the SI, but left out all the vague "we don't know" guesses.

and when i went to philadelphia, i did take the letter my GP wrote, but instead of taking the "supporting documents" he gave me, i made sure i had a better more thorough and accurate file. and as you said, i was honest with him, but being able to discuss things was invaluable.

hadn't thought that i could do this with a new GP in town, but maybe i can, that would be good. i have a really nice file now. just a few more things to add to it.

thanks for the suggestion.