My name is Julia and I have Multiple Sclerosis….I think. We’re pretty sure anyway. This will make more sense after a bit of reading.
I struggled a bit with where to start with this blog, but decided the beginning was as good as any place. Everyone’s MS story is slightly different….this is mine.
My journey started in late summer of 2013. I was experiencing periodic loss of vision in my right eye. This had happened before and I had seen several folks to address it, but I was told initially that it may be migraines and was later told that I had papilledema (optic disc swelling) in both eyes and that it appeared to be normal for me although not normal in the general population. So, when this started repeating in late August of 2013, I didn’t panic. I did get a bit nervous when it was happening more and more frequently during the day and becoming distracting, so I returned to the ophthalmologist.
After discussing what I was experiencing and looking in my eyes, I was told that some testing needed to be completed as soon as possible to rule out a few conditions. Off I went for my first brain MRI and a large amount of lab work.
After this first round, I was sent off to a local Neurologist. Several of my lab results had come back positive including my Lyme disease titer. It was decided that I needed another brain MRI, a cervical spine MRI, and a lumbar puncture.
Off I went again for more testing. The lumbar puncture was completed first – within just a few days of my visit with Neurology. The procedure itself was way less exciting then I expected although I did end up with a spinal headache and had to get a blood patch. I received a call from the Neurologist that I had a high opening pressure leading to a diagnosis of Idiopathic Intracranial Hypertention. I was started on medicine to reduce the spinal fluid pressure and it was expected that my vision would improve. I thought we were fairly settled at this point. I had a diagnosis that explained my loss of vision and the medication was going to correct the issue. I was asked to return to the Neurologist in a month for follow-up.
Out of the blue (for me at least), I received a call from the same Neurology office telling me that the remainder of my lumbar puncture results came back and that my MS panel was positive. I remember being very confused on the phone. I just couldn’t understand what they were telling me. I was told that they were unsure of the significance of the results, but wanted to send me along to an MS specialist just in case.