How to Have Great Doctor Visits (Tips from the Pros)

Robin Mead

Tips from super smart readers on how to have great doctor visits to help create accurate records for their disability cases.

🌷 When I am choosing a doctor, I always tell them I am on disability and ask if they will assist with my reviews if needed.

Some doctors tell me right away that they will never do disability paperwork. Some doctors have an office policy about “no disability paperwork.” That is not the right doctor for me. – RL

🌷 When I go to a new doctor, I always let them know up front that if I’m rechecked by disability, I’ll need them to write a brief note explaining what my illness is and that I’m not able to seek or maintain gainful employment. So far, each have done that for me. – Clarissa Shepherd

🌷 I always remind the Doctor to add all of the symptoms I report in my medical records. I take a list of the official symptoms for ME/CFS and highlight all of them which pertain to me and ask them to add those to my medical records. Afterwards, I have a record of the visit mailed to me to make sure, its all being documented. – Clarissa Shepherd

🌷 Tell your doctor about all your symptoms and how much they limit you. Try to talk with her about this while she is writing in your records. If you tell her while she is examining you or while she is standing at the sink, she may not write it down.  – BC

🌷 I made a special appointment with each of my doctors to fill out disability paperwork. I just knew they weren’t going to fill out the forms if I didn’t sit there with them. Plus, I wanted to be there to answer any questions they might have. If I wasn’t there, they would have had to guess, and they might guess wrong.  – Violet

🌷 Communication with your doctor is SOOOOO important. Let your doctor know what is going on with you, even if nothing is changing. Make sure that every time you go, you are address the biggest health issues you are experiencing. – Heather

🌷 When I go to the doctor, the first thing I say is an update on my condition. It makes me feel better that what is written in my records is accurate. I don’t care if I repeat myself every time. It usually sounds something like this: “I am continuing to have severe, disabling symptoms from Fibromyalgia and Lyme Disease. I have severe fatigue, dizziness, and widespread pain. I cannot stand more than ten minutes or sit up more than twenty minutes most of the time. When my symptoms are bad, I need a caregiver to assist me with eating, bathing and dressing.”  – Linda

🌷 Whenever I go to the doctor I spend the entire visit talking about my symptoms: which symptoms are severe, what kind of things I cannot do because of my symptoms, what kind of help I need, what side effects I am having from medications, and discussing my doctor’s suggestions for treatment. EVERY visit. This is the only thing I ever talk with my doctors about.

I asked my friend what happened during her doctor visits and she said she thought she was explaining her symptoms, but when I read her records they were filled with notes about other things: her activities, hobbies, family, and other random things. There was not very much information about how sick she was. – Dahlia

🌷 I discovered that most of my doctors were documenting my symptoms wrong (For example, I would report joint pain, and they would write nerve pain or muscle cramping).

So I decided to type up a health summary with relevant info from my medical history, plus new issues and symptoms since last visit. Then I also write and print a second page with a list of the things I need from the appointment (lab tests, med refills, paperwork to complete, urgent issues, etc).

Presenting my doctors with a copy of my symptoms that is typed and in my own words has helped to get info documented more accurately in my file. I always leave it with them, in hopes they either scan it to my file or refer to it when they make their notes about what symptoms I was experiencing. – Ann Eide

Learn More

🌷 How to Work with Your Doctor to Get Great Disability Documentation

2 thoughts on “How to Have Great Doctor Visits (Tips from the Pros)”

  1. When I got symptomatic in 2006, and in 2007 I started a spreadsheet with daily rows and columns including hours slept, depression level (1-5), anger/rage/explosive level (1-5) (I’m mixed state Bipolar), and for each of my meds. Since then I have expanded it to include calorie and type of calorie in, calories burned in direct exercise, steps, and floors climbed (I do much of my exercise climbing steps in my apartment building). That spreadsheet has followed me from California to Maryland, across 30+ medications, through lots of psychiatrists and therapists, and from Microsoft to G-Suite (Cheers to the geeks who got that- and by the way, I now use Forms to enter the data I haven’t been able to automate). I have weekly appointments with my therapist and my psychiatrist, and my usual report is gross numbers going back 30 days, the 1, 2, and 4 week averages, A graph of the last three months for sleep and mood scores, and a separate report that gives all my current meds and when they are taken (keep in pocket all the time too in case hit by bus and paramedics are trying to treat me before I’m conscious- they need to know because os issues with med interactions. Since all this stuff is on G-Suite, I’ve set up observation rights for Psychiatrist and Therapist so, for instance, if I’m trying a new med, they can see day by day any changes.

    Anyway, I hand the two sheets of paper with binder holes already cut to them when they walk in, and make sure they include in the records. Periodically (i.e. when manic and angry so lots of energy but I can’t go outside because I’m sure to lose it on somebody) I will drill down the data set, put together stats of each med I’ve tried against mood and other pieces. Pairs of meds that were used together. Seasonal Averages (I was able to show I didn’t have Seasonal Affective so I didn’t need to stare into the damn light box), and changes in amounts of meds over time (showing that I am not having gradual increases in the meds I am on that people worry are “habit forming” (why is Rx opoids habit forming, but opium on the streets is addictive? Oh, that’s right, racism…).

    I am a geek and this is how I have brought my geeky powers to bear on the issue of tracking my illness, for Social Security, and for trying to get better, and for the hope that others will one day do the same and there will be a large enough set of data points for other geeks to determine what meds are affective, what meds are affective for a subset of the population, and what meds are not affective.

    A geek can dream (of data points)…


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