Medical Records Tip for Your Rheumatoid Arthritis History: Read the Doctors’ notes
It’s your Rheumatoid Arthritis history
As much as you wish you did not, you own your RA. No one wants the fatigue and pain of Rheumatoid Arthritis. However, by default, you are the manager of your Rheumatoid Arthritis treatment.
Last time, we peeked into the doctors’ notes of an RA’er. In addition to the hysterical diagnosis stuff, we noticed that Kim had ultrasound results which had either been misinterpreted or ignored. Those ultrasounds had revealed the early damage of Rheumatoid Arthritis and indicated that she should have been treated much earlier.
Have you read the medical records from your Rheumatoid Arthritis specialist?
Last year, another RA’er gave me this advice: get copies of all of the doctor’s notes. Make sure that you understand what is being written about you. Make sure that everything is correct.
Here’s why I did not do it at that point:
- While I thought the advice sounded good, I was worried about offending the doctor / staff. Not a good sign.
- And I worried about the cost of obtaining the copies. There were signs on the office walls warning of the cost of records. More bad signs.
- I was worried about what I’d read. That old ostrich problem rearing its head.
A lesson learned about Rheumatoid Arthritis management
A few months ago, I made an appointment with a new doctor. Of course, they asked me to bring my records. So, I finally went through the long process of obtaining them.
I gathered up records from every doctor I had seen about anything related to my Rheumatoid Arthritis, including the podiatrist and the ophthalmologist… Since I was careful to only ask for the “doctor’s notes,” it did not cost me too much money. But it did take time.
From the beginning, I have kept copies of all of my lab reports. I have always recommended this, since so much can be learned from them. This is very easy if you request a copy from the lab each time you go.
Juicy tidbits in my RA history
So, what was in the doctors’ notes? A couple of highlights: I read that I am “seronegative.” Hmm? With my high Rheumatoid factor and anti-CCP lab results? How’s that possible?
Among the various pages were also reports that I “deny” rashes, fatigue, stiffness, and photosensitivity. Of course, I remember complaining of all of those symptoms. It would be hard to forget.
And of course, if you read the notes of other doctors in my file, you’d read that those were my chief complaints, after pain.
Did it matter?
When I presented my carefully prepared medical records to the new doctor, they declined to accept them. The doctor did not even peek. However, from now on, I will. Like I said, it’s my RA to manage.
Postblog: the sooner you start, the better. If you ask for copies as you go, it probably won’t cost you anything. And if there’s a problem, you’ll know right away.
Recommended reading:
- Another tip: Preventative First Aid for Rheumatoid Arthritis
- Tip book reviewed and my tips added in: Rheumatoid Arthritis Tips Book Review
- I have now reached 100 posts! Here’s my very 1st: Rheumatoid Arthritis can make you patient
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Hi Kelly! Great post — it IS good to know what your doc is writing in your records. But I have to take exception to your first sentence: “As much as you wish you did not, you own your RA.”
I don’t “own” this disease. It’s not “mine.” I view RA as an alien invasion of my body, an invasion I battle each day. I try hard not to refer to it as “my” RA, because I believe that what we perceive to be true often is true, at least in our minds. If it’s “my” RA, it means I have to like it. Most things I don’t like I get rid of, or don’t “get” in the first place.
I know I’m being nit-picky here, but semantics are important. How we think of ourselves and the ailments that assail us make a difference in the way we approaching coping with them.
I do like that you say we “manage” the disease. That’s a far more benign description. I “battle” the disease. I fight it, I manage it, I deal with it and cope with it. But I sure don’t own it.
Thanks for this post and your other writing. You’re doing a valuable service with kindness and compassion toward your fellow “warriors.”
good idea, Kelly!
I have never thought about getting these. Are doctors notes different from complete records. I don’t understand medical terms, although my current “team” of medical people are good about explaining.
Kelly, terrific post!
You should know that HIPAA allows you to make your doctors notes correct if you want/need. You can place a note in them with information, corrections, additions etc.
I went thru some VERY old ones last week and noticed that I was diagnosed yet not treated for macrocytosis and vitamin B12 deficiency years ago – nearly 15! Knowing this could have saved me so much of the life I’ve missed. The damage is permanent now – there’s no going back. At least my kids and me are being treated now. I should have been more careful. I know better now! The bad news is that I have a tendency to tick off controlling doctors. *sigh*
Thanks so much for putting this out there – we share part of the responsibility for correct records and for our health.
I have sneaked a peek at my family doctor’s notes. Very interesting reading. This post is making me curious about my RA doctor’s notes. Hhhmmmm. I see him next month…
Wow, it is scary to think that there are things in my medical files that could be a possible diagnosis I am not aware of. Really frightening! I really should take initiative to keep an eye on things. Supervise my dr I suppose.
I think sometimes the doctors come up with “off the wall” diagnoses because the insurance companies require them to put one down in order for them to pay. The actual diagnosis/code may or may not have anything to do with your true diagnosis. Just my theory.
Hi Kelly
my wife and I have been reading a fair number of your posts. Here in the UK its not easy to persuade the NHS Doctors to part with even blood test results. I know my wife has asked for copies when ever she has had the opportunity. Not sure if doctors notes can be requested here.
Any advice for a husband on what to do when yr wife is struggling with severe stomach pains which she is pretty convinced is as a result of the course of methotrexate which she started about 6 weeks ago. Initially she had terrible diarrhoea over the first few days. She has been complaining of stomach pains on a regular basis.
When you have no faith in the RA consultant, nor the local GP. and you are petrified of hospitals as a potential source of infection… where do u go – what do u do?
Any suggestions welcomed.
I recently got copies of one rheumy doctor’s visit notes to take to another doctor; when I read them, several visits had incorrect descriptions of my history. They said I am a black woman (I am pale white; can’t even get a tan) and that I have been hospitalized for four pregnancies (I have only been pregnant once; I have one daughter). Those other three pregnancies would have been difficult to accomplish considering I have had a hysterectomy, which was also in my patient history!
Miss D:
the doctor’s notes would be without the labs or insurance papers, etc. Just what the doctor wrote about you and your visit or treatment plan.
Casea:
We are laughing out loud here! “Hysterical”-ly funny.
Orchy, I am sorry.
Tell your wife I will pray for her. Hopefully, the side effects from the methotrexate will eventually pass. Can she ask the doctor whether maybe she can take less and then build up slowly to a higher dose? I have taken anti-nausea medication with good results, but we are all different.
(Note: ck back here for methotrexate info page soon.)
On the spouses of RA’ers issue: I know someone who is starting an online group/blog for spouses. I will send some info about that to you.
Finally, on the trust of doctors. I have learned this lesson right now: I will not complain about having to switch doctors again. I will thank God that I still CAN switch doctors. I cannot imagine not being able to see my blood test results or the doctor’s notes.
This comment is for Orchy:
What would the possibilty of having methotrexate injections instead of pills? That’s what I’m doing and have had no stomach issues at all (my stomach is sensitive and other medicines have torn it up!)…giving myself the shot has not been as easy as I thought it would be but I think over time, mind over matter will kick in and it will be easier for me.
thanks, Jenny!!
(that’s in the article, but forgot to mention last night…
I totally agree not only does that help make sure things are getting done it helps educate your self about your disease and helps you take charge. Nothing more empowering than that!!
Kelly–My Ten Commandments alas failed. I came down with the pig flu
Sorry to hear that.
We had it here, but it was not as bad as last year’s “regular flu.” Hope you are better now.
Yes, I agree. Knowledge / empowerment is important. We can benefit from controlling what we can about the RA. That is one “benefit” of doing our own shots, I always say.
(I still like your 10 comdts.)
Thanks for the information on doctors notes. I am an RN and an RA (along with other issues) patient. I collect a lot of the notes from all of my visits and its amazing how much inaccuracies I have found. Is it that some of the doctors don’t listen? Or are they just filling space? My records said I had endometriosis (huh???), one MD stated he discussed all kinds of treatment options which he never discussed with me (or even brought up). I had an ortho PA who said “straight leg raise..etc, etc) when it was never checked. The bottom line: Yes, know what they are saying about you! I have copies of all my radiology and lab tests always and keep an excel chart of my labs.
About Methotrexate: I just started back on it again. I found if I take it in a divided dose during the day it isn’t as harsh on my stomach. I take 4 in the early am and 4 at lunchtime (the same day of course).
As someone who has worked in the medical records departments of several hospitals since I have graduated from college, I can completely concur that patients should DEFINITELY read/acquire copies of their medical records! I’m with you Kelly, I always ask for copies of my lab work, or at least ask to see them when I go in for my appt. I don’t know if it’s because my physicians are aware of my medical coding background, but none of them have ever had a problem with me asking to look at my records (and their notes). Also, if you are taking your records to another physician, you most likely will not be charged a copying fee. But, if you are wanting copies for yourself, just get the pertinent information in order to keep the cost to a minimum (office records: just dr’s notes; hospital records: get the discharge summary, history and physical, any operative notes or consults…as long as it’s dictated…don’t even think about trying to read your doc’s handwritten notes, not worth the headache if you aren’t getting paid to do it! Plus, they have to summarize all of that information into the d/c summary. If you have any questions about the information in your records, you do have the right, as mentioned above, to ask questions and ask that the record be corrected).
I had to have a diagnostic laparascopy soon after I was married; my ob/gyn suspected that I had endometriosis. I was told by my physician that I did have endometriosis and she fulgurated several lesions in my pelvic area. Several years later, I had to get copies of my records to take to a new physician when I changed jobs. Out of curiosity, I decided to read through my operative note from that surgery (2 years previous at this point). NO WHERE in that op note did she mention finding or removed endometrial lesions!! From that point on, I became a “pest” to all my physicians. I tell them up front that I will probably be their most annoying patient. (And that got even worse after I had my son…really had it out with his first pediatrician!)
As for the inaccuracies, sometimes I wonder who is the most at fault? The physician, who has seen so many patients that day that he can’t even remember his own name, or even the transcriptionist, who is only concerned with getting her line count for the day? And, even though the physician is supposed to read through his transcribed reports before signing them, the majority of the time he just scribbles his signature at the bottom and keeps on going. So many reports get sent through like this and then it’s part of the patient’s medical record FOREVER unless the medical records personnel diligently follows up on these errors (that stuff always made me crazy, so I always tried to have it corrected…oh, hello, this patient is FEMALE and the note says MALE…fix it please…
Okay, sorry….this is obviously one of my “soapbox” topics!!!
Thanks Tina for great comments & suggestions. And I agree it doesn’t really matter whose fault it is, it’s our responsibility to get it right – just one more hard thing about RA. We have to keep our own records so we can manage this RA.
I’ve kept copies of everything – doctors notes included for quite a while now. Not only am I prepared with a very neat binder for a new doctor, but I am able to see firsthand how different meds are affecting me.
The biggest thing that has been helped by keeping copies is my Social Security Disability Case. Every time I go to a doctor, I update my attorney with test results, doctor’s notes, med changes – anything that she might need to win this case.
Doreen,
Lady, you are doing an awesome job. Any doc would be afraid to “mess” with you! (Joking, ya’ll!) Good luck with your case.
Thanks, Kelly – I know they are quite taken aback by me at times, but oh well – we have to be our own best friend. To everyone else, we’re just a number.
My docs office has gone paperless so everything is scanned into the computers and the doc has access to everything on her laptop. Every time I visit my doc, I have to fill out a series of questions about how I’m feeling at that moment (which usually has nothing to do with how I’ve been feeling overall). I very carefully think about each question and try to answer honestly.
On my last visit, I happened to be in a position to read the doctor’s notes when my page was opened. All I can say is that there must be magic answers that allow the doctors to prescribe the necessary treatments so that they aren’t denied by the insurance companies. The guidelines are so strict and the good doctors know that we, as RA patients, don’t always follow those rules.
Thank you Kelly for letting others know about this important step in managing RA.
I was diagnosed at age 5 (30 years ago)and my mother never thought to do this. As a child it was no big deal because I saw the same doctor (general practioner- no rheumatoligists back then!) throughout my childhood until I went into remission in Highschool. Then as a college student, my disease relapsed but I had no proof that I had been diagnosed with JRA or any of the treatments that I had been through. My childhood doctor had retired and any records over 20years old had been destroyed. I spent precious years trying to get treated by the campus doctors who refused to listen or believe me. (they only looked at the rh factor, which I was negative for!)
It wasn’t until I graduated from college and got a job with health insurance that I was able to see a rheumatolgist and start treatments again. My rheumatologist is unbelievably awesome and automatically sends me copies of my records and any letters to my other specialists FREE OF CHARGE!! After every appointment, I recieve the copies within a couple months.
It was so nice when I applied for disability to go to my medical file and hand over all my medical records to my attorney without having to leave my house! (btw- I was approved within 4months without a denial and without having to jump thru their hoops!)
It has also saved me a lot of legwork because my rheumy has changed medical offices 5 times in the past 8 years. Each time she has moved, her medical records had to stay with the previous office. Because I had copies of her records, she was able to make copies of my copies to keep in her new offices; thereby allowing her to have a complete history on me without having to go by memory!
I can not stress the importance of doing this enough- not just for RA but for any medical treatment and especially for your children’s medical history. The records at Dr offices will not be there forever, they will eventually be destroyed and you never know when you may need them!!