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Discussion Starter · #1 ·
I wasn't sure in what catergory to put this topic, so it may get moved. My question is, how many of you have your complete medical history--everything, every test, every result, every observation, all your meds and what time frames you've taken them? I'm not an organized person and I'm at a point now where I need a second opinion or two for my lupus crisis (as i'm calling it). I've been in the same medical center--Emory University for 5 years (since I was diagnosed) so they should have everything on file. I know it is my legal right to have this information. Did you find it hard to acquire this? I filled out a form yesterday at my doctor's office and had them give it to my rhuemie's secretary, but who knows how long this will take. I'm going to keep calling and harrassing her until she gets my info to me. This is my life we're talking about.
 

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I don't have my entire records which would include, psych. doc, GP, rheumatologist, cardiologist, nurse practioner, neurologist, surgeons, ortho doc, and on and on.......I do have x-rays of my broken hip and my GP just started a program where you can get some access to your records online, with a password, but I have never asked for the complete record, I think I might have to pay per each sheet but I am not sure. I have been seeing my GP for 13 years, psych. doc for 13 years......Whew, I would have lots of papers around. I guess I hadn't thought of asking for them. Karly
 

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It sounds like you're on the right track, and should have copies of what you want within a few weeks hopefully. For me, I do not have my entire medical history, but a few years after my lupus diagnosis I started requesting at each doctor visit for them to send me a letter with a copy of all test results (MRI, blood tests, U/A's) as well as the doctor's notes. So I have everything within the last few years at least at home. I find it easier to keep up this way, especially since my doctors offices ask if I want a copy for my records when I check in to each appointment. They merely enter my request into their computer and I automatically get sent everything in the mail (for free).

I do think about obtaining the records from the first year of my diagnosis in particular, but just haven't gotten around to it. It's more a matter of curiousity but I remember the things that tested positive so no big deal really.

Good luck with everything. Did you ask how long it will take before they get you copies of your records?
 

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Lauralee-
Those never ending HIPPA forms we all have to sign at every doctors office now guarantee that you have a legal right to your complete medical record if you request it.

The form you filled out would be the official request form. I would stay on top of them, however. Copying a large medical file for a patient is pretty low on the totem pole for a busy or understaffed medical office.

Once you receive the records, go through them with a fine tooth comb, and make sure nothing is missing. It is very easy for them to get distracted, come back to what they were doing, and not copy the complete file. I have also had problems with copies being illegible, and have had to ask for them again.

Every time I have a lab test or other procedure, I request a copy for myself to be mailed to me right up front. This way I always have a copy to get to other doctors right away when they request it.
 

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Hi Lauralee,

It was about the time that I started searching for answers (before lupus diagnosis) that I began collecting my records. It took a while to get old records, but once my GP requested them, things speeded up. My GP agreed with me that it would be a good idea and so she has been very cooperative and helpful.

Any doctor office that gave me a hard time, she would personally request the information for me. That really helps.

Now, I request that all information, including doctor's notes (a wealth of information that they don't always include in your records), go to my gp and she has her staff make me copies.

As far as being organized. I am so not! :) Once I got everything organized, I took a cue from the records themselves and got a file organizer and divided the records into office visits, hospital stays, labs, and tests. Then they are filed in date order from old to most recent in front.

It took my two organizers!! :eek: But like so many of you, I had been a pretty sickly young lady leading up to then!

I sure hope this helps you some...and stick to your guns! It is your right.

Love, Pollyanna :love2:
 

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Yes, I obtained all of mine years ago. There was a reasonable charge for photocopying. If anything has gone wrong in your treatment you may find it distressing to see it written down. I had some bad treatment which is why I needed the files, it was not funny but it was valuable and I had little trouble getting them.
x Lola
 

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Discussion Starter · #7 ·
Thanks for your responses on this. I just want to feel more knowledgeable about my lupus and have the file in case of an emergency situation. I've now had about 3 or 4 hospital visits that are lupus related and many tests were done, so I would like to have all that info handy. I also might need a second opinion on something sometime.
This disease is so complicated--all the different levels and complements and what they mean. And I know that knowledge is power...
 
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