Shortly after my diagnosis I experienced numbness on the side of leg. I don’t recall how long it lasted. It might have been weeks or maybe months. About two years later, I experienced more numbness in my leg. The questions I couldn’t answer were: Is it the same leg? Was it the left or the right? Is it a new symptom or a recurrence of an old one? I couldn’t remember, and that’s when I decided to keep an MS diary.
I divide my diary into three parts. The first is doctor visits. I record the date, the reason I scheduled the appointment (was it a simple checkup or was something going on), and what happened during the visit. I write down the results for any test the doctor performs for example, the “follow my finger” test and so on. Did any problems occur during the tests, or was everything normal? I also keep a record of any hospital visits. I write down what tests were run. Did they do an MRI, and what where the results?
The second part of the diary is for prescriptions. I was once prescribed a certain medicine for my fatigue. It didn’t work for me. Years later my fatigue came back, and my doctor wanted to prescribe me some medications to alleviate the symptoms. I was able to flip to the prescription page in my diary and request a different medicine.
The last part of the diary is for symptoms. I write down anything “weird” that I feel on the first day that I realize it and an approximation of how long the symptom lasted. The winner so far for brevity was numbness in my tongue that lasted for about an hour. On the other end of the spectrum, a quick errand in Manhattan turned into weeks of discomfort. I took a cab ride to run the errand. The driver swerved and made quick turns. I became dizzy and nauseous with vertigo. It lasted for three weeks. Yuck
For me, my MS Diary is about empowerment. I feel that I have more knowledge about my medical history. And if I change doctors, I can bring my history with me. This is a life long illness. Keeping track helps me to keep my MS perspective.