I Love A Good Rollercoaster Ride, But…….

Welcome back, all. MSFMS is back for another installment. It’s the end of Spring, and the beginning of the journey into the hot season. If you continue to keep up with MSFMS, you will learn why that is a concern for anyone with MS. So, well, read on.

Now, where did we leave off on the last one? Heading to an ophthal…..ophtha…..ah, fuck it. It takes too long to type that word. Let’s just use ‘The Eye Expert’ or ‘TEE’ from here on out, okay? Okay. Let’s tee it off!

So, I scheduled an appointment with TEE. Keep in mind, at this time I had no insurance of any type. I (or more accurately, my awesome lady) am paying out of pocket for everything. The first visit came along with a $250.00 bill before the cost of tests, but it needed to be done. After I fill out my  ‘first time visitor’ forms, I sit in the lobby, waiting for about 2 hours. (This waiting thing is a common thread in this story. Anyone with a continuing medical condition will back me up.) I am watching home improvement shows on the lobby T.V., which they had tuned to some DIY network. The newlyweds who were on the show that day had bought a home, and then later found out that bees and termites had pretty much destroyed many of the inner walls of their ‘dream house’. They were going to have to literally rebuild a good portion of the building. “You never know how bad the situation can be underneath the surface until you look inside.” is what the host kept saying. That, I assure you, did not calm my nerves one iota. What was going on behind the walls of my body? What kind of bees or termites were eating away inside my head? Had I permanently damaged some important part of my eye?  Did I have a tumor? Was it cancer? Had I had a mild stroke? Was I going to get a bionic eye just like Steve Austin? (No, young readers. Not that Steve Austin. I’m referring to the original Six Million Dollar Man, Lee Majors.) All of this and more was circling in my mind.

Samuel Clemons once wrote, “I’ve had a lot of worries in my life, most of which never happened.” Clemons, whom most of you know as Mark Twain, has several amazing quotes! This one, though, is my all time favorite. And very true to boot! While I lived Mark Twain’s quote, I watched a six or seven year old girl walk out with a brand new eye patch, crying about having to wear it. I understood her sadness. Sure, it sounds cool to wear an eye patch like a pirate, but when you are forced to……..not quite the same excitement to it.

I watched a woman sit down in the lobby not far from me, wearing her new Terminator-esque shades, which fit uncomfortably over her normal glasses. I could see her hands were shaking as she fumbled around on her cell phone, trying to figure out who to call to come pick her up. I overheard her conversation with the woman at the front desk.  She had not expected to be told she would not be able to drive herself for the rest of the day.

In the distance, I could hear yet another small child screaming at the top of its lungs. Only my imagination could tell me what was going on there.

All I knew is that the whole situation was scaring the absolute Hell out of me. Little did I know, this was minimal fear in comparison to the next few months. Finally, my name was called. I was finally going to find out what the hell was going on with my eye, or so I thought.

As I was led down the hallway to the room I would be examined in, I passed the room with the screaming child. She was screaming about how much it burned her eyes. I soon found out what ‘it’ she was speaking of when the assistant gave me my dilating eye drops. Now, it didn’t hurt nearly as much as I had expected, due to the childs screams, but yeah……it did sting. I could understand how a child could perceive it as torture. The assistant then left me in the room, telling me I needed to give the drops time to take effect before they could take pictures of my inner eye.

Boy howdy, did they take effect. Everything became a surreal, brightly colored wonderland. To be honest, at first, it was kind of fascinating. It made the experience of an acid trip come to mind. (Gosh, no. I don’t know what an acid trip is like. I’ve never tried it!! Also, between ‘Gosh’ and ‘it.’  is a lie.) I was actually enjoying it the optical effect. That was until the visual overload began to give me a monster of a headache. The first of many to come.

The assistant came back in and informed me that the eye expert was running a little behind with the patient in front of me. She motioned to the door I had passed on my way in. The room with the child I had only heard, but not seen. Just the opposite of what the old adage states. (The poor child, was now simply emitting a smoldering remnant of the original screaming sobs.) She said she was going to lead me into another room and do some vision tests and internal pictures of my eye. The experience of walking down the hallway, which seemed to be much more brightly lit due to dilation, was a bit of a challenge. She made a joke about the fact that they probably should have done the vision tests before my dilation, but it was obviously too late now. Gee, that gives a patient comfort, right? (Sarcasm. See, I told you I like to use it.)

No surprise, the vision tests weren’t useable at all, but the internal pics did produce results. This I found out back in my original inspection room.

When we returned to that room, I was happy to find out the kid across the hall was gone. Under normal circumstances, I can’t stand the sound of children. Happy or sad, they make the same ear drum abusing, shrill sounds. Since I was already stressed, the damn sticky little alien’s shrieks had been making me sweat like I was in a hot yoga class. I was thrilled the kid was gone. The lack of the noise caused me to be much less nervous.

This time, I didn’t have to spend very long alone in the room. The eye specialist came in shortly after I sat down. He introduced himself, and proceeded to tell me that the internal photos showed that the optic nerve in the problem eye was inflamed. Unfortunately, he could see no evidence of why. He was baffled. He told me that if I had time, the specialist (Huh? I thought he was the specialist.) at the office would be available in just a few minutes, and he would like her to look at the pictures, and give her opinion. Well, I didn’t have to go to work for a good few hours, so I figured, why not hang out. My sight was worse than it was when I walked in, thanks to the eyes being dilated, so where the hell would I go anyhoo? So, I sat by myself for several more minutes, trying, with little success, to inspect the many eye models and charts placed around the small room. I thought maybe I could figure out what the problem was myself by comparing the pictures of my eye, which still hung on the large computer screen, with the models of healthy and unhealthy eye examples. I did not figure it out. Surprised I didn’t figure it out? Yeah, neither was I.

Finally, the specialist, and the guy I thought was the specialist, came back into the room. The specialist got right down to brass tacks after introducing herself. She used a machine to look into both of my eyes for comparison. The machine reminded me of the one Harrison Ford used in Blade Runner to test a subject on whether or not they were human. I wondered the same of myself. Maybe, just maybe, the specialist would sit back and say ‘Wow! I don’t believe you are from this earth! You are something completely different!’. That would be no surprise to many people who know me, if it were the case. But, I’m sure you can guess, that didn’t happen.

She simply sat back and reiterated that the optic nerve was most definitely inflamed. She then flashed bright lights in my eye and proceeded to ask me several questions that I answered as honestly as I could. By the way, quite often it is extremely difficult to explain exactly what you are seeing, or more importantly not seeing, to someone else and make it make sense to the listener. I’m not even going to try to relate the exchange of Q&A here. Still I tried my best. Honesty with your doctor, I have found, is the best way to get a desired improvement in your condition. I highly recommend it, no matter how embarrassing it can feel. Even if it doesn’t pinpoint the problem, it’s best that they have all the information possible. On this day, it didn’t pinpoint my problem, as you will soon find out.

After an entire morning, and most of an afternoon at the TEE office, she felt an MRI would reveal more useful information. So, an MRI was scheduled to take a closer look at the eye. Great! No insurance, and here comes a bill for a much needed MRI! They are not cheap!

Now, I had saved up some money over the last couple of years, but, boy howdy, that disappeared after the MRI, which was scheduled just a couple days after the visit at TEE. This would be the first of several MRIs to come in the next months. It also, not only because of the cost, was the most difficult MRI out of them all. To explain why, I’m going to ask you a question. Have you ever tried to keep your eye steady and unmoving for minutes at a time? I’ll give you a few moments to try it………..Did you give it a shot? If you did, you now know, open and focusing on one object, or closing your eyelid so no outside influence is available, it is almost impossible! Good God, it was grueling! The announcement over the intercom by the technician of, “Sorry. We are going to have to try that again.” came several times. I can’t tell you how many, exactly. I lost count. Finally, after I have no idea how long, it was done and over with. I was able to collect my things, go home (much poorer than when I walked in), and wait nervously for a week to pass before my follow up MRI review at TEE. A week of pure angst and fear. Yet again, the first of many to come.

Now, I know in my last installment, I told you this one would catch you up to finally getting a diagnosis. Sorry. I lied.

Trust me. I thought, while this was living the experience, I would have known something, hell anything at this point. You can be sure that I was much more disappointed than you are right now.  At this point, we are only two weeks into an almost four month journey to diagnosis. But don’t worry. We’ll get there. Right now, though, we are still getting the ‘click, click, click, click,’ of the rollercoaster cars going up the first incline. The first drop hasn’t even crested. Make sure all hands, feet, arms, etc, are inside the cart and your lap bar is secure. The bottom is about to drop out.

Until next time, dear readers, keep on smiling! Even when it hurts. And it really fucking hurts at times.



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