The Big One

12 Mar


This is something that I really think that we take for granted. That is until it is compromised. I think that since eye problems are something that I have had to deal with since I was 7 it wasn’t as bad for me. The pain though…. But let’s start from the beginning.

My very first symptoms. There were a couple but since they happened at the same time I decided to let them share a blog as well.

It all started with Vertigo, then an up-beat nystagmus in both eyes, and optic neuritis. That is the order in which they were diagnosed.

The Vertigo I already described so I won’t do that again, just keep in mind that that was underlying everything else that I am going to describe. Adding that at the time it was so, so much worse. Like I had just gotten off of a spiny ride, but all the time. I walked into a lot of walls. 😦

Up-Beat Nystagmus. The clinical description is that the eye drifts down and then jumps back up to correct itself. Well for me it was happening so fast it was like it was bouncing. Besides it adding to the vertigo symptoms I didn’t really notice it. Except if I tried to look at just one thing all by itself. Like for the eye exam. The doc turned off the lights had me hold that stupid thing up to one eye, turned on the light box and asked me to read the lowest line that I could. Which for me is the giant E. Well I told the doc that if he could stop making it bounce then I’d read it for him. That’s when I got sent to the ER. 🙂 So unless you are used to having good balance most of the time, or stare at objects often, this symptom (when coupled with the knowledge that you have a disease already) isn’t that bad. It’s possible that having this all by itself would be different, but for me it was just the side show to the Optic Neuritis.

Optic Neuritis. This was the bane of my summer 2 years ago. Optic Neuritis is painful. I can’t think of anything real to use as a description. It hurt to look in any direction but straight ahead. Even then there was pain all around my eyes. Like the socket itself was hurting. I hate to get graphic with you but… It was like being poked with needles (around the eye) if you tried to look in any direction. Keeping my eyes closed was the best. Not always possible. Especially since this symptom lasted for around 6 months. The holidays were the worst. When people wanted to talk to me and I had to look at them. That was another thing. My vision was very blurry. I had to stare at something for a long time before I could actually tell what I was looking at. Unfortunately concentrating like this with my eyes brought back the needles. Except this time the pain was actually in the eye. People really worry about you when you are staring at them intently with tears in your eyes. Especially when all they just said was “Hey did you like the turkey?”

On Tyler’s first day of school that year I had to pick him up in their all-purpose room. The whole school lines up there by class to wait for their parents to come get them. I had never met his teacher, this was the first time in this school, I had no idea what I was doing or where Tyler was. So I walked into the giant white room with thousands of blurry things that looked like people and just stared. I’m sure I got lots of strange looks, but who would know. I couldn’t see. Finally I focused (painfully) and found Tyler. But that was a horrifying moment for me. It was definitely the closest I’ve ever felt to going blind.

On top of the pain and in ability to focus I had double vision. I’m not sure if that is actually part of optic Neuritis. I’m not sure if the focus problems are part of it either. They told me that the pain was. I did learn that driving with double vision is not a good idea. I did a lot of that. 😦 I was refusing to admit to myself that I actually had a problem. I wouldn’t let other people help. Hence my blog title. I’m getting better at that though. (not really 😦  I actually think that I’m just getting so good at pretending there is nothing wrong with me that people believe me now)

Unfortunately these symptoms lasted a very long time. I went through 2 rounds of solu-medrol. The only benefit that I got from that was that the day or two afterwards I was lucky enough to experience relief from the symptoms. Otherwise I was starting to wonder if it was going to get better at all or if I would just have to deal with this for the rest of my life and pray that it didn’t take away all of my sight. Imagine feeling like that. 😦 It was not fun. I found out that they make glasses that you can wear while driving to correct the double vision though. Good to know in case it happens again.      

Now I just pray that it never attacks my eyes again.


Posted by on March 12, 2012 in Life with MS


Tags: , , ,

3 responses to “The Big One

  1. unicornprincess81

    April 12, 2012 at 1:04 pm

    Optic Neuritis sounds horrible! Sorry you had to deal with that!
    I have a question: Is your sight now back to normal again, or did any of the symptoms last?

    • Janet DiFolco

      April 12, 2012 at 2:35 pm

      Most of the syptoms went away. They took a year to go away, but I can see fine now. The only thing that really stayed was the vertigo. That is something that I deal with pretty much on a daily basis. I only have problems with my eyes if I am really tired and stressed. At that point it starts to hurt to look to the sides. That is a good indication for me to take a nap or some yoga. 🙂

      • unicornprincess81

        April 12, 2012 at 11:30 pm

        Glad to hear that your sight is back to normal.
        Thanks for your fast answer. 🙂 .


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