Don’t Forget to Remember Everything

When I was first diagnosed with multiple sclerosis (MS), all my symptoms felt so new and strange. At the time, I couldn’t imagine how I could ever think of them as “normal.” But over time, after some symptoms started sticking around, I did start to “get used to them” like people always said I would.

Initially, each of my symptoms felt as noticeable and distracting as a fly trying to land on my eye. But now some of them feel more like a fly that has quietly hitched a ride on the back of my shirt. In fact, I would go as far as saying that some of the symptoms I live with are almost “out of sight, out of mind.” This mostly becomes an issue for me when I’m seeing my neurologist, or when I’m seeing a new neurologist for the first time.

Painting a more accurate picture of my MS

I think of all the times that I saw my past neurologists and they asked me, “so, what’s going on today?” I might have had a few key things to talk about, but without a detailed list in front of me, I always drew a blank. But I figured that if I couldn’t remember something, it must not have been that important. As if MS only makes you forget the least important of things. This went on for years before I finally decided that I probably needed to start writing all my concerns down on paper.

At first, I would just scribble down a quick list of concerns on a scrap of paper, sometimes even while I was on my way to an appointment. Of course, this didn’t help me remember everything that I experienced throughout the past week, but it definitely helped me remember to mention things I ordinarily would have forgotten. This was when I realized that maybe, maybe, my neurologist can’t provide me with the best care possible, because he isn't seeing the whole picture. Maybe I needed to keep better track of everything related to my MS.

They can only treat what they know about

How my neurologist was treating my MS was mostly based on what I could remember to mention during my appointments. What if some of those “little things” I was forgetting about were actually hiding something important? Something that would have been carefully considered when determining the best way to treat me? Or maybe they could have revealed some kind of pattern in my disease activity that would paint a better picture of how effective my current treatment was.

The more I thought about it all, the more “what ifs” I found. The clearer it became that a doctor can only treat what they know about. If I don’t provide all the details possible, I might be the one standing in the way of improving my health as much as it can be.

Notes and lists, as always

This concern of mine is one of the first things that led to my heavy usage of lists to help me manage my life, especially when it comes to my MS. At first, I just bought a simple college-ruled notebook that I could use each page of for different appointments. Between appointments, I made an effort to immediately write down every little MS-related symptom I experienced the moment I noticed it. This often meant scribbling down a quick note on a sticky note so that I could add it to my list later.

By the time I saw my neurologist, I had a detailed list of concerns much longer than the small lists I brought with me to appointments in the past. This, however, didn’t completely solve the problem of trying to paint an accurate picture of my MS to my neurologist, which I would soon realize.

Preparing to see a new neurologist

Sometimes, along your MS journey, you have to find a new neurologist for one reason or another. I’ve had many over the years, and one of the most difficult parts of getting established with a new specialist (in my opinion) is trying to get them all caught up with your MS story. Dates, symptoms, the medications you’ve tried, the doses, lab results, MRI disks, various medical records, and so on. These are just a few pieces to the giant puzzle that is the picture I’m trying to paint for a new neurologist.

From a simple list to a detailed journal

So, a few years ago, I started maintaining a digital journal on my iPad which would contain all of this information. I’ve organized it in a way that I can use tabs to quickly jump to any information I need, so when a doctor asks me about something I’ll always know just where it is. Any time I notice a symptom or think of something I want to bring up, I can quickly add it to my journal since I can access it from my computer, tablet, or phone.

I’m also still working to digitize my medical records so that absolutely everything needed to know how my MS has been acting is all in one place. Best of all, my journal is backed up to the cloud, so I’ll never lose it, meaning I’ll never forget to remember something… probably.