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

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.