I'm not entirely sure how to begin...I've had two episodes with my RRMS. Both of which involved my eyes. The first time it began, I thought I was maybe going blind. The eye doctor wasn't sure what was happening for sure and so he sent me to a specialist....then the eye specialist spent me to a neurologist and orders for a MRI (my first of many) with the unofficial diagnosis of a lesion in my brain.
I went to my first appointment with the neurologist went well...until she tried to immediately send me in for a spinal tap. I felt fortunate that one of their machines was down so they couldn't fit me in....However, she immediately made another appointment to come back. Not a fun experience. Even now I'm not sure I could go through it again....and yet I know that if I have to, I will.
Both of my eyes had been affected. The first time, I lost all of my peripheral vision. I couldn't see the traffic lights and cars would appear next to me out of no where. I was looking through a fog of light (almost like what you would see with your high beams on in dense fog). It was terrifying.
After many MRI's, the spinal tap, and several blood tests I was finally sent to my first MS doctor. He immediately started me on Copaxone, which I absolutely loved (note there is sarcasm in that statement)! It could have been so much worse though. That's what I kept (and still do) telling myself.
A year passed and I had my first relapse. Again, it was my eyes. This time, however, I was losing my head-on vision. I was having a hard time reading (which is my favorite thing to do). I was so upset. I played phone tag with my doctor for the day while I was at work. When I finally spoke to my doctor's nurse practitioner I was informed that I must admit myself to Ruby Memorial Hospital immediately. Terrified (yet again) because I had never been admitted to a hospital before, I had my boss drive me back to our facility so I could drive home and pack. I had to use this time to calm myself down because I began having an anxiety attack. So I drove home, packed a bag, and drove myself to the hospital because there was no one available to go with me.
I was there for almost a week. Steroids through an IV, measuring my urine in a toilet measuring cup, MRI's, CAT scans, and little sleep...among other things was what my adventure was all about. My medication was switched to Tefidera because the tests all showed that the Copaxone wasn't working for me. I had several more lesions and more on my optic nerve tract.
Since then, I haven't had my next relapse but I know notice permanent damage done to my eyes...and the heat. Ohhhhh the heat! I just can't take it! Anything above 70 degrees and I'm like a giant potato baking in the oven. I get so dizzy, the fatigue gets even worse (which I didn't think could happen since I'm always so tired anyhow), and sick.
My story seems so small to me though that I don't talk about it much. I just feel like there are so many that have it worse than I do. I feel as if I shouldn't let my own bother me so much. Like I'd be complaining too much.
I'v had to come to realize that my story (as small as it may be) still has had a large impact on my life. My MS has affected my family and my job in a rather large way. It's also affected my confidence when dealing with certain things such as intimate relationships and what's going to happen if my boss decides that she's had enough of my "excuses" on why I can't do certain things.
Even now I'm having a hard time handling my situation. A lot of times I pretend that it just doesn't exist. I suppose it's only that I'm not sure how to handle my MS and my lack of visual symptoms. Many don't think about the invisible side of MS and I don't know how to explain it to them.
Maybe one day, things will become more well known to others and I won't have to feel so self-conscious about it.