Multiple sclerosis is a chronic illness that we will have for the rest of our lives. In order to take care of ourselves, we have to be able to participate in medical decisions and care, which includes being able to quickly access information about our latest test results, as well as reconstruct a history of our symptoms and the various drugs and procedures that we have tried (including information about what worked and what didn't.)
I wrote the following article as a section of my book, The Multiple Sclerosis Manifesto: Action to Take, Principles to Live By. I think it gives a good start to getting one's medical information into a form that it is easily accessible and useful:
How to Tame Your Medical Information
An important part of actively participating in your medical care is having control over the huge amount of information about your situation. Clearly, medical information can get out of control pretty quickly, especially with a chronic and complicated condition like MS. There is information about doctors, procedures, tests, medications, billing and insurance.
By having a system to collect and organize all of your health-related information, you will be able to find what you need, when you need it. Having all this information in one place will really help. When you have a relapse, are feeling sick or are panicking about a sudden new MS symptom, you are very likely to forget some important details. These details could prevent potentially harmful drug interactions or may be used to speed diagnosis. Taking the time to gather your information now will make you feel more in control of your MS and more ready to deal with any health-related situation that may occur.
It’s not really that fun to do this, but you will feel proud when you get this together. I recommend trying to do it in a week, with a big reward waiting at the end.
Step 1: Set aside time.
Depending on your health care situation, you may need as much as 30 minutes each night this week. Look at your schedule for this week and set aside some chunks of time to complete the steps listed below.
Step 2: Create a medical information binder.
Get a binder to store your medical information in. Make sure it is one that will be comfortable (and fashionable) enough to carry to appointments.
Step 3: Decide on your emergency contact people.
Label your first page “Emergency Contacts.” Choose three people as your emergency contact people. They should be local and able to get to a hospital and help you if you need it. Be sure to tell each person that you are listing him or her as an emergency contact. Double-check phone numbers and other information. This is important, you will need this information handy when you go to see new docs or if you are admitted to the hospital, in many cases. While you are at it, enter their phone numbers in your cell phone using the names “ICE1,” “ICE2” and “ICE3” (“in case of emergency”), as police and paramedics often look for this.
Step 4: Write down your current doctors.
Label the next page “My Doctors.” Make a list of all your current doctors and medical providers, along with their telephone numbers and addresses. Be sure to list your doctors (including your neurologist, your primary care physician, your gynecologist, and any other specialists that you see), your dentist, your eye doctor and any other providers like physical therapists. This is also a good place to list the numbers of your pharmacies, including the mail-order one that provides your disease-modifying therapies or other specialty drugs.
Step 5: Write down your current diagnoses.
Title the next page “Diagnoses/Conditions.” In addition your MS, list any medical conditions that you have been diagnosed with. Include things like high blood pressure and high cholesterol, as well as any allergies or illnesses. Try to recall the date of diagnosis. You can estimate if you have to. Give some indication of your status by using words like “mild,” “under control” or “severe.”
Step 6: Write down your current medications.
This one is very important. Label the page “Current Medications” and list all the medications you are currently taking and what they are for. List both the commercial and drug names of the medication. Be sure to include the dosage and the number of times a day you take it. Estimate when you first started taking each drug and if (and when) the dosage was changed.
Step 7: Write down anything else you are taking.
Label this page “Non-Prescription Items.” If you are taking any vitamins or other supplements, include the name, dosage and frequency just like you did with your medications. You may also describe what the supplement is for and/or what the main ingredients are. Also include non-prescription drugs, such as cold remedies, pain relievers, laxatives or stool softeners – anything that you take without a prescription. If you are trying any complementary and alternative medicine approaches, make a note of these, especially things like chelation, bee venom therapy, homeopathic remedies or anything else that enters your body.
Step 8: Record your medical events.
Make a separate page for each time you had a serious medical event, such as a surgery, a hospitalization, a prolonged course of treatment, labeled with a reference to that event (for example, “2004 Relapse with Optic Neuritis” or “2006 Insertion of Baclofen Pump”). One these pages, write down any information related to the event: symptoms, diagnosis, date, treating physician, treatment, outcome, medications, dosage, side effects, tests run, results. Record as many of the details as you can. Be sure to include any related test results on your form and include a copy of them in your binder if you have them. Have one page titled “MRI Scans,” and list dates of any MRI scans that you had and make a list of where the films are located or who has the images. If they are on a CD-ROM, you can include them in a sleeve in your binder.
Step 9: Get a box and label it “Medical Information.”
Whenever you receive a benefits statement in the mail, billing information, or any other piece of paper about your medical management and care, put it in the box. That way you know where everything is. If you need something, you can sort through the box until you find it. It is not an elegant solution, but it will work because it is convenient to do. This is for information that you should save but probably won’t need access to. Be sure that test results are placed in your binder immediately – don’t put them into your box.
Step 10: Keep your binder current.
Don’t forget to update your information whenever anything changes. Keep your emergency contacts, test results, current medications, information about your doctors, as well as any other relevant information, up-to-date.