I took my new med Gilenya before bed and went to sleep with no problems. I was actually tired and went to bed early, which I had expected, another reason I want to take it at night. This morning I couldn’t seem to rub the blurriness of sleep out of my eyes, well my right eye. I am normally right eye dominant but can switch fairly easily, so on to take my daughter to school. About half way there I realized that my eye was actually blurry, with a slight white halo of white haze around the edges. With my daughter being Autistic, I didn’t want to let on that something might be wrong. I was starting to panic when I finally got her to school. I waved her off and was very careful to double check my surroundings before pulling back out onto the road to head to work. It’s a trick I learned in physical therapy for my Vertigo, to fully stop when changing directions and let my eyes focus so I don’t fall on my butt. It didn’t work very well, so I just closed that eye. On the interstate towards both work and home I tried to call my doctor but I couldn’t focus on the contacts list nor read the names or numbers. Somehow I ended up in my text messages so I stuck the phone on the steering wheel so I could see it and swiped to call my room mate to let him know something was wrong.
The eye thing is called a macular edima, and its a Major concern with Gilenya. The package, the inserts, the reviews, even the nurses who did the observation told me to call my doctor immediately if I notice changes in vision. Now I want to point out that less then a month ago I had a full eye exam as is required before starting this medication. It reported no changes in vision or prescription, which is how it has been for the past 4 years. It was so bad that as soon as I got home I had to have him dial my eye doctor because I couldn’t read anymore. My eyes would not focus, mostly the right eye. And yes I did clean my contacts, switch eyes and even opened a new pair. No change.
Off we go to my eye doc, who wanted me there right away. I get there, and the nurse runs her tests. I had a really hard time reading the lines with my right eye and was trying really hard not to rub at it. I get in with the Doc and he says, “This can’t be right! Why didn’t we see this before?” Oh doc please don’t say that!! He personally runs the tests again. He is an odd man, he likes to pluck the contacts right out of my eyes, which is a little freaky. He takes the right lens out, brings one over from a trial pack and plops it into my right eye. We run the tests again with the new lens. Originally it was like having only 1 lens in and trying to function normally. Now its still blurry, not as bad, but now I feel like I’m seeing two different levels. Minor improvement. He says I have increased a full point on my prescription but only in the right eye. I haven’t changed in 4 years, and even then it was .25 percent. This time it is a full point from -5.50 to -6.50. He wants me to try this for a few days.
I called my MS neurologist and left several messages. I called the head of medicine with my MS neurologist and left several messages. Then I called the Urgent Care center where I had the 6 hour observation. At least they answered the phone, but told me to go to the local ER…….. Never got a call back. Everyone keeps telling me that if it was a bad thing they would call me back asap. I have no doubt I will never here from them. I don’t know if I should take another dose or wait. So I waited a while, then went to work. I looked like a moron having to sit so close to my computer screen with 1 eye closed taking phone calls. I guess Ill just keep taking it and adapt. If nothing else, I am still good at adapting. Trying to stay positive but my sarcastic side keeps popping up and saying “Well if I go blind in 1 eye, then Ill qualify for disability and wont have to worry about what is happening with my FMLA.”
Happy thoughts. Jam (which my co-workers LOVED), soap, Daughters B’day tomorrow, plants, seedlings, corn planting on Sunday, amazon, research, Girl Scout cookies, bread making, Hot chamomile and green tea, comfy PJ’s, purple tomatoes, Netflix, star wars light sabers, friends and family………………