FIRST NEUROLOGIST APPOINTMENT
This video was taken around the time of this visit, Eric realized his handwriting was gradually getting worse and worse.
Erics first visit with a neurologist was in early October. At this point he began requesting time off for all the doctors appointments trying to figure out what was going on. He was working from home so he would try and schedule things during his lunch break, or for another random hour of the work day, and then go right back. This was another FaceTime appointment due to Covid, that I could luckily be there for since Logan was napping. Eric once again, described his symptoms. The neurologist listened very carefully, and had Eric do a few different exercises as she watched. She watched Eric walk back and forth to see his awkward gait, she watched him do different exercises with his hands to see his weakness, and generally just asked him a bunch of questions. She saw Eric’s clonus, which at the time we thought of as incessant bouncing, his hyperflexia(over reactive reflexes). She asked if he had any pain; this is a very important question, because MOST of those living with ALS don’t experience pain in the beginning, the pain comes with gradual muscle loss and lack of movement.
She told Eric he needed to schedule an MRI and an EMG. She said she was concerned and wanted to rule some things out before Eric’s next appointment.
After Eric’s appointment he got an email with an overview of his visit. In the notes, the doctor had written “ALS, maybe MS and Leptomeningeal Disease” - Leptomeningeal Disease is an advanced stage cancer of your cerebrospinal fluid, with 3-6 months survival rate.
We felt our stomachs drop as we read it, we had gone from “well it could still be a pinched nerve or Lyme disease, to please be MS, please be MS.