Make a list of questions that you want to ask your doctor. Whether you write them down on paper and put them in your wallet or purse or type them into your phone and take your phone with you, listing all of the questions you want to ask your doctor in advance helps make the most of the short period you will have with them. Many people get flustered talking with doctors or distracted by the doctor’s questions and forget to ask all of their own questions. Include any ongoing issues that you would like to address. Patients should also list goals for their treatment, such as “reduce knee pain so I can walk more.”

Keep a journal of your symptoms, their severity, and any medications (over the counter or prescription) you use to try to treat them. Do you have brain fog, cognitive impairment, pain, swelling, or stiffness? Record that data! Use a 3-level scale to quantify your symptoms. Level 1 is fully functional, level 2 is applicable but impaired by signs, and level 3 cannot function. Keep it simple so that you will be able to enter your data easily and quickly every day. Yes, every day. Be honest, don’t downplay symptoms. Note anything that worsens or improves your condition. Take a printed copy with you. Take it every time you go to see your rheumatologist. Make sure they scan it into your records so that there’s documentation of your progress and level of function directly in your medical record.

Your doctor’s purpose is not to educate you about your illness. That is the patient’s responsibility. Patients who actively participate in their health care have much better outcomes. Yes, it is tedious and anxiety-provoking to read about this disease but to receive the best treatment, patients need to know the terminology and communicate effectively. The Mayo Clinic’s web page is a great place to start researching treatments.

Figure out a plan for how you approach treating this disease, which medications you want to try, which side effects might be an issue with your lifestyle, etc. You will need to vocalize all of this to your doctor.

If this physician is new to you, have your medical records sent to them well before your appointment. You will need to request Lab results, test results, X-rays, images, and notes/records from your last few doctor’s visits and sign a release of information for any prior doctors to release your information to a new doctor. Most systems do not require you to bring paper or hard copies anymore. You can very often have these records sent digitally. However, we recommend keeping your physical copy of your medical records, including everything listed above. You can scan these into a digital file and save them somewhere. Or you can keep a physical copy, but you should have a duplicate copy of your medical record somewhere to facilitate getting your documents sent somewhere quickly. This will be helpful if you have an urgent need and cannot get in to see your regular physician. This is especially true if you have an emergency on the weekend and your rheumatologist only works Monday through Friday.

Your doctor will not necessarily remember you and your case from one appointment to another. Often, they will not even have time to look at your file before they walk into the exam room. They see a lot of patients, and appointment slots can be as brief as five minutes. To conserve valuable time during office visits, it is helpful for the patient to compile a one-page summary of their Ankylosing Spondylitis (AS) medical history. This should include the age at which symptoms appeared, all medications previously tried, information about any surgeries or injuries, a list of all current prescription and over-the-counter drugs and supplements, present symptoms, any side effects you’re currently experiencing, and ongoing concerns. This information is in every patient’s medical record, but it is not always easily accessible for appointments.

Specialists like rheumatologists give out a tremendous amount of information at once. Especially for those not well versed in medical terminology, it can be challenging to keep track of everything your doctor says. Also, specialist appointments tend to be relatively short. It is almost impossible to remember everything that you will be told at your appointment. Therefore, if you have a partner, spouse, parent, adult child, friend, or someone you’re comfortable with knowing your medical information, then taking someone with you to the doctor is a great option. Make sure that if you take someone with you, they are not on their phone the entire time. Their goal should be to help you listen to everything the doctor says so that later on, they can help you remember advice, instructions, etc.

You can also ask your doctor to make an audio recording of your appointment. In this state, you need permission before you record anyone, so you must ask your doctor first. This should only be done when the patient is in an isolated room with their doctor. You don’t want to accidentally record someone else’s private medical information (which would violate their HIPPA rights). Keep in mind that your doctor does have a right to say no.

If you cannot take someone with you and your doctor doesn’t want to be recorded, bring a notebook to your appointment and take notes. You might feel silly, but when your doctor lists a complicated protocol for beginning a medication, you will be glad you have a piece of paper to write it down.

Most importantly, you must speak up. You are the only one who can help your doctor understand how much your illness impacts your life. If you have concerns about medications and side effects, if you are not improving, if you want to try higher-tier medications (such as biologics), you must be able to communicate that and persist until you feel heard.

Doctors are often constrained by insurance about prescribing higher-level medications. It may require additional phone calls and paperwork to get onto a biologic. All these things are worth the effort if the biologic improves function and slows down permanent damage. Don’t be afraid to ask your doctor to request authorization from your insurance. If you feel that your doctor is not treating your degree of disease aggressively, it’s never a bad idea to see another doctor. Aggressive early treatment is what preserves function in this illness. Any Doctor who wants to go slowly endangers the patient’s long-term mobility.

After your appointment, take a moment to record any information you may have missed while it is still fresh in your mind. Keep up your end of the deal and get any testing done as soon as possible. Do not procrastinate.

Ask for a copy of your doctor’s notes and all details from your appointment for your personal copy of your medical record. This is a smart way to ensure you always have an up-to-date copy of your medical history in case you want to change doctors. It can also provide valuable insight into the doctor’s perception and understanding of the patient’s symptoms. If a patient has voiced an issue that is significantly affecting them and doesn’t appear in the doctor’s notes for a visit, it is time to change physicians. This may not be ready on the day of your appointment.

Know what your next steps are before leaving your appointment. Ideally, these should be written down during your appointment or typed into your phone/device. Do you need to do testing or imaging? Are you starting a new medication? Are you being sent to another specialist? If so, do you need to contact them? Do you need to communicate anything to your doctor before seeing them again? Do you know how to contact them in case of a flare-up or medication complication? Have a follow-up scheduled as you leave.

If your doctor prescribed a new medication, now is the time to read about that medication. Educate yourself about the common side effects. Will you need to begin this medication on a day off? Will it affect your ability to drive? If you are taking any other medicines, you should go online and double-check to ensure your new medication doesn’t have any dangerous interaction risks. This can be accomplished through Google search, drug information from the manufacturer, or (the easiest option) through a drug interaction checker website or app. One of the best of these is My RX Profile. There is an app and a website.

My RX Profile allows users to create a security-protected profile that saves their medications. Pharmacists double-check for interactions between your medications, but they occasionally make hazardous errors. Prescription drug interactions can be dangerous and require hospitalization. Because of this, it’s in your best interests to put in the extra effort and ensure your safety.

The YouTube video explains what you can expect during your visit with a rheumatologist.

Rating your doctor online can be very helpful to other patients. It also allows you to double-check your feelings about your doctor’s performance and care. Below are links to two websites to rate doctors.

Ratemds.com

Healthgrades.com

If there is anything with which you are unsatisfied, do not hesitate to seek a second opinion or try a new doctor. Too often, patients feel obligated to continue seeing the same rheumatologists. See a different doctor if you don’t feel listened to and are not improving after a few visits. It’s one of the best things you can do for your health and happiness.

Photo by: image of valelopardo on Pixabay.

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