Keeping Track of Your MS

We all trust and hope that medical providers keep accurate records and maintain documentation in an orderly fashion. But things happen – papers get misplaced, lost, or destroyed and when this happens, the patient suffers.

So what can be done in advance to reduce the chances of this negative effect?

Keeping track of your medical records is the best way to assure that the information about your MS treatment stays organized. However, this can mean different things to different people. Finding a way to organize and keep your medical records in a way that makes sense to you is important.

Some individuals may find sorting records by year helps to track progression or change over time. While others prefer to sort based on testing or specialty, tracking things such as MRI results, bloodwork, or therapy. No one way is better than another. It is about finding a way that makes sense to you and one that will help you along the way.

Take into account the type of materials needed to organize your medical records. Three-ring binders are helpful in securing documents, making sure they stay in place and are not easily lost. Dividers and tabs can be used to distinguish a change in the record, whether it’s a year, type of test, or doctor. Labels written on with dark marker can be placed on the outside of a binder to help identify what is inside.

Depending on the size of your medical record, bring the record with you to an appointment. It can be used as a reference with the doctor, or can be a place to take notes during a visit. After the appointment, ask the office staff to make a copy of any records discussed at the time of the appointment and place them into the organized medical record.

By keeping track of your medical records, you are taking an active role in your health care. In which way do you keep track of your MS? Which system works best for you?


Keeping Track of your MS

I thought I would share a “tip” on how I keep track of my MS – so I’m able to recall things when needed or share information with other members of my health care team (who are not my neurologist).

So here is what I’ve done. I went and bought a HUGE binder… and I requested all my Medical Records… Personally, I had to get medical records from my diagnosing neurologist (general neurologist) and my MS Specialist neurologist. But I also got my records from all my other doctors.

I find this a lot easier when I need to recall past treatment… while I can sit here and name off MS treatments I’ve taken, I can’t always recall the dates in which I was on certain medications and/or received a specific treatment for something.

My medical records binder also includes my MRI reports. I also requested my MRI reports from the radiology clinic, because I’ve found that when I have a followup appointment, and I have the records on hand… it’s easier to go over with my neurologist… especially since results can take some time to be sent.

Now let me say that this is a work in progress… because I’m always getting more medical records… I usually collect them after I have a “change” in my health… or every 6 months.

I also take the time to place my records in order by date. So it’s kind of like a binder timeline of my MS…

I’m currently working on getting dividers for the binder. While I like things in order by date, I thought it would be beneficial to categorize things further, for example: Primary Care, Neurologist, MRI Reports, etc. I’m also contemplating getting a small binder for each category, so if needed, I can take a binder with me.

It’s all about personal preference… and honestly… some people could carry their medical records with them at once… but I have A LOT of records, so that wouldn’t be so easy.

It may not be needed a lot… but I can tell you that I’m very happy that I requested my records… because it has helped me make  decisions since I was diagnosed. For example, I decided to change from my diagnosing neurologist, to a specialist. I had been contemplating the idea, but then  I went over my medical records and I saw that there were things documented in the records that were “discussed” with my mother and I… that actually were NOT.

Just know that as a patient, you have the rights to your medical records. You never know when they might come in handy and they may help to keep you on track.