Information & encouragement to fight RA
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.
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!
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.
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.
(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. :pig:
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. :pill:
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.
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!!
THANKS so much – absolutely perfect timing for me to stumble onto this one. I’m on the 3rd rheumy. The first doc retired and just don’t have that connection I NEED with the second so on to the 3rd. I have copies of all the blood test for the past 8 years, mri slides of feet and most lab reports but was not sure IF I really needed to see my records – doc notes. I was at the point of letting it go but now have my curiosity up …hmmmmm…..something I will be asking for from now on! Thanks again, Jamie
Keeping your medical records is very, very, very important. I pray that you all will never have to apply for disability, but if you do, the copy of the records will move things along faster and you will stand a better chance of being approved.
I was told I would never be able to get a medical disability from the government, but from the day I began the paper work, I was approved in approximately 8 weeks.
When I went on to get my Social Security disability, I was approved in approximately 10 weeks. I prayed and went on line to find help with the Social Security disability. I ended up calling Midwest Disability Law firm and they do every thing for you. However, I had kept records of my Asthma; Severe spinal Stenosis with herniated discs, to incl all MRI’s, CAT scans, X-Ray’s, etc; my Internal Medicine doc’s reports; my Rheumatologist’s reports; and the reports I had from my Neuromuscular pain specialist.
Since I have worked in the medical field since the 70’s, I knew I had to keep copies of all records. The Lord sent me to the right doctor’s; gave me the wisdom to keep or get all records; and finally, HE directed me to MIDWEST DISABILITY LAW FIRM.in Minnesota.
I only stop to share, praying tat this information will help others. I knew nothing when this all began 6 years ago, but the Lord guided my steps. Maybe I can help someone else. Love in Christ,
Thanks, Vern. Another reason to be sure that they are correct too.
If anyone has trouble with SS disability, make an appointment to see the caseworker in your local US congressman’s office. They have caseworkers that do this. They knowmthe system and have the contacts to make the process go more smoothly.
I heard about the Open Notes Project recently on NPR, and thought it was worth mentioning here. http://myopennotes.org/
Let’s hope more doctors get on board!
Thanks, May. I’ll have a look.
I am 73 and was diagnosed with RA eight years ago. I am on Remicade infusions and Methotrexate, which seem to work quite well as I am fully functional. My problem is that I must drive 185 miles (round trip) every eight weeks to see my rheumatologist. All she does is take my BP and listen to my lungs and her nurse asks me a few questions (the same questions every time). I only have to drive 25 miles to get my infusions, and i can handle that just fine, but I just dread that 185 mile trip every eight weeks for such routine procedures — my back and hips stiffen up from sitting so long, My question is this: Is there any way my local doctor can monitor my RA from here and I can cut my 185-mile trips to once or twice a year? I know my doctor would be willing to take on this task if it is not against some medical protocol. I haven’t asked him yet.
Jackie! Ask him! Maybe he would be glad to have your general doctor / GP do those things and fax him all the info as long as you keep doing well. That is awesome to hear the meds work for you. I would think the rhuem doc would love to switch to a 6 month arrangement if you told him something like “I travel this far each time because you are a great doc & I don’t want to switch to a closer doc. But, can we change the scheduling though…?” Let us know how it goes.
It was reading my Rheumy’s notes that pushed me over the edge to fire my latest Rheumy, besides his reliance on labs and not seeing inflammation if it was under his nose….I got a hold of a copy of my last Rheumy visit notes…I was shocked..he had claimed he had examined joints which he had never examined. Claimed they were NORMAL when he never even touched that joint! He claimed I had OA of the shoulder when I had normal xrays and again he never examined the joint just asked me to raise my arm..which had just had surgery due to shoulder impingement NOT OA….I had limited range of motion due to the surgery only… I was shocked..I was NEVER put into an exam room…I just sat in a chair fully clothed for him to make these determinations….
I will repeat for everyone…READ your Doctor’s notes! I will not be going back to him…
14 years ago I was diagnosed with breast cancer. I always did self-exams – my maternal aunt had breast cancer and I had read of the importance of early diagnosis. I found a lump – my doctor said it wasn’t a “lump” – that I was just “lumpy” because I was in my 40’s. I asked for a 2nd opinion and was sent to a surgeon – same story, not a lump, just “lumpy”. My gyn finally felt a lump 2 1/2 years later and asked me if I knew I had a lump – I replied yes, I’ve known it for 2 1/2 years (she had missed it on previous visits too). After an ultrasound confirmed breast cancer, I had surgery, chemo and radiation and I survived. I also had cancer in two lymph nodes – probably because I went undiagnosed for 2 1/2 years.
Several years later when I had my medical records sent to a new doctor, I relayed my breast cancer history and the 2 1/2 year delay. As I was telling my story, the new doctor was looking through my original medical records from the previous doctor. The new doctor said, “Well, you knew you had a lump because your previous doctor’s notes state you had a lump and even wrote the size of the lump”. I explained, again, that neither of the two doctors at that time ever told me I had a “lump”. Damned doctors – I am just thankful I am alive. This was back in 1996 – I am still baffled why my PCP or the 2nd opinion doctor (a surgeon) did nothing. I can only suspect it had something to do with having an HMO at the time, but that is only a guess.
I’ve never had to pay for copies. I explain that since my insurance paid for the chart, it belongs to me, not the doctor. Same for X-rays. I said that since the insurance paid for them, they are mine, but if they need to keep a copy, they can pay for it. I always used to read the paper chart when they hang it outside of the exam room. I would wait until they left me in the room, open the door, and grab it off of the wall. I always found it funny when the doctor walked in and I was reading his notes. I have also had doctors make note while I am there. For example, when a PCP refused to give me a referral, I asked that a note be made in the chart that I had requested it and was refused. Wow, he sure changed his mind quickly! These new computer charts make it more difficult. So I just stand up and read over their shoulders. If a doctor is embarrassed by anything in the. Chart, I don’t want them treating me.
Annie, you are brilliant & I wish you could be in the exam room with each one of us as our advocate! If we all adopt this attitude this very minute, it might help turn the tide!
I recently requested copies of my doctor’s notes to carry to a new rheumatologist. I was charged $82.00 to get a copy of MY records. UGH! And her notes were disgusting – certainly not accurate.
I really liked the new doctor but it is a six hour drive to get to her. So in a decision mode as to what to do. Drive six hours one way to see her or stay with the one local that doesn’t believe RD affects anything except hands and feet.
At least the new doctor assured me it can affect every part of your body. She also examined me thoroughly, which the local doc never does and I mean never.
Again Kelly thank you for all you do! You are a blessing.
Thank you Kelly. I haven’t thought of getting my medical records. I do recall oh so many yrs ago I saw how over run my folder was at just one of my doctors. Of course they had to start new folders because one could not hold all the records. I have often thought what kind of information is being recorded for my files to be so full or actually full is an under-statement.
Now you’ve got me really thinking. I think I would love to see what is in my files.
Thank you for the advice
I think this is a great idea. My doctor early on said what I had was an “inflammatory arthritis” and she wasn’t sure if it was psoriatic or rheumatoid or what. The last month I noticed she had changed my diagnosis on my paperwork to RA. However when I got a copy of the office note it still says inflammatory arthirits. So which is it? I need to go see her anyways because the pain is still bad and the methotrexate helps very little so I will try and clarify
I realize this is a very old post, but I am wondering how you go about asking? I am VERY afraid of offending my doctor, although he is a nice man, and his office staff is atrocious! Not to mention the fact I have been diagnosed for 2 1/2ish years, is that going to cost me a fortune?
My doctor said recently, “Well, we all have to work” and I have a sedentary job, I have severe pain and severe fatigue and in general am just worn out. I would like to know he is not working against me so to speak if I did at some point decide to try for disability. Yeah, we all have to work, but some of us just can’t anymore. And if I am doing so well or my disease is so mild, why am I on my 5th or so RA drug.
I’m newly diagnosed and had my first visit with a rheumatologist about 2 weeks ago. Thankfully all the records are available online so I could review what he recorded. What a mess! I think the only thing he got right was my age and gender. I’ve asked for another appointment with him since I have questions I need answered, and will take a corrected copy of his note along. If he can’t get his “stuff” together, I’ll be looking for a new rheumy!
Teri, extremely typical: the notes. Not at all typical, but totally awesome: your response to deal with it!
Please lmk how that goes. Good luck.
From my phone – please excuse errors
Hi Kelly and all others,
I finally decided to do something for me. I started to see a Dr. in Nov.2014 about always being in pain. She did blood test and said I had RA and I was Vitamin D deficient, also laughed as she stated that my neck bone was shifted to my shoulder is due to me being so thin and bones perforate, then sent me on to the RA specialist. He was what I thought to be a blessing. Immediately sent me for X-rays of my neck and lower back,(in same the visit) viewed them with me and told me I had three disk crushing together and Sclerosis that had eaten up half my tail bone. Told me I had to do research and wanted to see me in three months, needless to say I thought finally someone believes me and is going to help. Three months later He says he has no idea why I’m there to see him and that if my hand is not twisted up like the model on his desk I do not have RA and I don’t belong there. Back to step one…. New Dr. changing it up again to Fibromyalgia. Go figure
Thank for all of your comments and strength.( all of you)
It is so much easier these days now that many docs have a web-based patient portal. After each visit, I get email notifications as notes are ready and x-rays and labs come in. I can peruse them and send in comments and questions. Most of the mistakes I find are comments entered by ancillary personnel. O can clear them up with an online comment of my own or bring in a print-out of the questionable comment(s) to discuss with my doc. Glad to see patient agendas are being investigated and found helpful. That will save me making notes and then leaving them at home!
Hope all is well or at least better with you!
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