As a reference point, we are still in October here. It amazes me still to think back to everything that happened in such a small amount of time.
In late October I visited with the MS Specialist for the first time. The visit was long. The nurses did a series of tests before the Neurologist came in and we talked for an extended period of time about my history before she did an exam herself.
I went into this visit with expectations. I was sure she would confirm the MS diagnosis and help me choose the appropriate medication so that I could return to “normal” life again. Instead, I was told that I may have MS or I may have Neuromyelitis Optica (NMO aka Devic’s disease). Remember the 6.8cm lesion? Well, it seems that MS lesions average around 1.2 cm in length.
How is this decision made? We needed to start ruling things out and get more blood tests. I was sent off to Infectious Disease to address the positive Lyme result found several weeks earlier, to Rheumatology since I also had a positive ANA, and back to Ophthalmology to address the ongoing concerns with my eyes. I left with the working diagnosis of Transverse Myelitis.
Although I liked the doctor very much and trusted her right from the first visit, I left in a bit of a stupor. I remember that we had stopped in Whole Foods on the way home to pick up groceries and I had to leave the store at one point because I was having a panic attack. In such a short time, I went from no diagnosis to several diagnoses and now we may be modifying what my brain was trying to accept.
For a girl who loves nothing more than planning and control of situations, this was a total nightmare. I felt like someone was taking my life and tossing it up in the air to see how things landed. There was nothing there for me to hold onto.