Any time you’re considering a new move with multiple sclerosis (MS) — whether it’s finding a new doctor, trying a different treatment or therapy, or considering a lifestyle change — it’s important to have your medical history readily available to consult.
Organizing your MS medical history takes time and patience. You may have to gather records from several doctors, facilities, pharmacies, or insurance providers.
But having your health history, test results, prescriptions, and insurance documents in front of you saves time and allows you to share accurate information with your doctor and other healthcare professionals.
How you choose to store your records is entirely up to you. Some people find that using online patient portals and websites to access medical information is easy and convenient, while others prefer to have a hard copy of everything so they can flip through it before or during an appointment.
The good news is that there’s no right or wrong way to organize and store. It’s all about finding what works best for you.
With that in mind, here are some things to include and six methods of organizing your MS medical history.
Now that you’ve committed to getting organized, it’s time to sort through the various piles of papers and shred the ones you don’t need.
This is also a good time to make a list of documents you’re missing and need to request. You may need to do some detective work to locate records from various offices and medical facilities.
But when you do make contact with a healthcare professional, ask whether they can give you both a paper and digital copy of your records or results.
Here are some essential documents you should have easy access to at all times.
List of medications
An up-to-date list of medications is a must-have in your medical history. This should include current and past medications as well as any vitamins, minerals, or other nonprescription products you take.
When listing medications, make sure to include the name and dosage.
You may also want to keep a list of allergies or adverse reactions you’ve had to specific medications. If you’ve ever stopped taking a medication, it may be helpful to list the reasons behind that decision (e.g., side effects, high cost, etc.).
CT scans and MRIs
Computer tomography (CT) scanning and magnetic resonance imaging (MRI) results that were used to initially diagnose MS should always be included in your medical history.
Doctors can often access images online, but it’s always a good idea to have one or two copies on a CD or flash drive, just in case.
Also, include any hard copies of the results that explain the images. You can keep one CD or flash drive at home as a backup and put one in your medical history binder.
If you can’t remember where you went for a CT or MRI scan, you can contact your insurance company. They should be able to tell you the name of the facility where your imaging was performed.
Blood work results
Routine blood work and any tests, including cerebrospinal fluid (CSF), related to an MS diagnosis are important to have in your medical records. This includes recent and past results.
Having older blood work may be helpful when looking at the progression of the disease or if you’re experiencing new symptoms that may not be related to MS.
Having easy access to current insurance information can make appointments, intake paperwork, and submitting claims go a lot smoother.
It’s not necessary to include all insurance paperwork like an explanation of benefits booklets in a medical history system. You can simply include the documents you’ll need when visiting a specialist or pharmacy.
For example, current insurance cards with your name, policy number, plan type, and insurance company contact information.
Consider placing your insurance cards in a small cardholder that you can keep in a purse or wallet. And make sure to have all of your cards, especially if you have coverage from more than one company, such as a private insurer and Medicare.
Of course, you can always access benefit information online or check the booklet at home before heading out for an appointment.
Now that you have all of the necessary medical history documents, it’s time to figure out the best way to organize them and where to keep them. Here are six ways to keep your MS medical history available.
1. Medical records binder
This binder is just for you and should hold everything related to your MS medical history. Don’t include medical information for your family members unless it’s relevant to your records. You want this to be clear and easy to sort through.
You can separate the contents with page dividers, labeled by category. For example: medications, blood test results, imaging, insurance paperwork and billing, and doctor’s notes.
If you have CDs or documents that aren’t standard size, add a few top-loading plastic sleeves to your binder. You can slip these items into the sleeve and place them in the appropriate section. You can also use these plastic sleeves to house business cards from each healthcare professional you see.
If you’re using a paper copy system, make sure to periodically purge outdated documents. For example, when you get new or updated insurance information, take out the old records before adding the new ones to the binder. Likewise, if you update a medication list, remove the current list and replace it with the new one.
Even if you’re going digital, try to have a medical binder or filing system at home. This can serve as a backup if a patient portal or website is down for maintenance or your records stop being available through those sites.
You can also use a flash drive, thumb drive, or external hard drive as a backup copy of your records if a hard copy system isn’t your preference.
2. Portable expanding folder
Some people prefer to use hard copy file folders and a storage box or filing cabinet located in their house.
The only problem with this system is that it’s not portable like a medical binder is. Before going to appointments or other medical-related outings, you’ll need to transfer the documents to an easier-to-carry system like an expanding organizer file folder or multi-pocket folder.
These storage tools often come with a handle to make them easy to carry, and since they are expandable, they look like a briefcase when closed and ready for transport.
3. Store files on a flash drive or external drive
If you want to go digital but still have something to bring to a doctor’s appointment, try storing your medical information on a flash drive and external drive. These small, portable devices are easy to carry, and you can make an extra one to give to your doctor.
That said, make sure your doctor or another healthcare professional is able to use an external drive on their computer.
Alternatively, you can bring your own laptop and flash drive to an appointment. This may be a quicker way to access medical records instead of searching through several files on your computer.
4. Digital files on your computer
If you’re ready to take the leap from paper records to digital ones, you can scan in paper documents or take pictures and save them as files on your desktop.
Apps like JotNot act as a portable scanner on your phone and save the documents as PDFs in a folder on your home computer.
Once your paper copies are digital, create files for each category and store records accordingly. Title each folder with an easy-to-remember name like MS medications, MS CAT scans, and MS blood work results. You can then do a quick search on your computer for those records.
Another organizing tip is to group like with like, even within each category. For example, if you have a lot of blood work results, consider grouping like results together.
If you opt for digital files on your computer, make sure the login is password protected. This should require you to enter a password after standby mode or when starting the computer.
5. Patient portals or other online tools
Secure internet sites (patient portals) managed by your health plan, hospitals, or other healthcare professionals are another tool for organizing and storing medical records.
A patient portal is a secure website through your doctor’s office, hospital, or other health systems that allows you to view your health and medical information. You’ll need to register and choose a username and password for each patient portal, so make sure to keep accurate records of login information.
You’ll also want online access to your insurance company. One easy way to organize your insurance documents is to request digital explanations of benefits and not paper ones. By obtaining information online directly from your insurance company, you can avoid piles of paper.
Also, secure cloud storage services like Dropbox or Google Docs work great for organizing and storing records. You can scan your documents to the Cloud and create a digital filing system. What makes this system so convenient is you can access your files anywhere, at any time online, using a tablet, smartphone, or computer.
6. Other websites and mobile apps for your phone and computer
In addition to patient portals, you can access several apps and websites designed to organize and store medical records and information from multiple sources on a smartphone, tablet, or computer.
It’s important to copy all paper and digital documents before adding them to an app. If possible, use the camera on your phone to take pictures of all your medical history and records. Then, create a folder to store them in. This way, you always have a backup.
You should closely read the terms of conditions and look for specific language about keeping your health, medical, and personal information private and secure. Also, make sure it states your personal information will not be shared, used, or sold without your permission.
There are several apps and websites that provide this service. Here are a few to consider:
If you use an iPhone or iPad, you already have access to a preinstalled tool called the Apple Health app, which allows you to organize and access certain health information.
The app has a health records feature that enables you to find and view certain records like immunizations, lab results, medications, and vitals from participating institutions. You’ll need to search the database to see if your healthcare professional participates.
Getting and staying organized — whether it’s daily tasks, your home environment, or medical history and records — is key when living with MS. Being an informed patient can make it easier to be actively involved in appointments and advocate for your medical needs.
Having well-organized and easily accessible health and medical records can help you feel better prepared when considering a different medication or treatment or when seeing a new doctor or another specialist.