Sunday, February 22, 2009

February - April, 2008: What Brought Me To The Mayo Clinic

It was about a year ago today that it started. I equate the years before February 2008 as the “pre-season” MS years. For example, in the NFL pre-season, fans still get charged the full price but it’s just not the same quality and level of competition that you get in the regular season. The head pains, sweats, stomach ailments, occasional loss of balance and so on – that was just the 2nd string playing on behalf of my MS. I had been taking my horse pills, I mean Pentasa, for a few
months and hoping that we were onto a new chapter in our lives. It turns out I was right, just not how I thought.

Angela and I went to Miami shortly after New Year’s to see Virginia Tech play against Kansas in the Orange Bowl. The Hokies lost (Kansas of course, cheated, at least that is how I remember it) but we had a blast meeting up with the Allard’s (sans kiddos and emergency room visits on this trip) and reuniting with some old high school and college friends. We had never been to South Beach before and enjoyed ourselves so much that we even started thinking about a return visit later in the year. After returning back home, Angela and I got pretty sick. It was probably from the traveling and preceding weeks during Christmas, Vincent’s Birthday and the New Year that kept us fairly busy. I think our bodies were saying “enough” and that they needed a break. After a few weeks, though, I was still surprised that I didn’t feel so well. At this point, I didn’t have a fever but just a lot of sinus pressure – I assumed it was a sinus headache. I can’t even remember if it was bad enough where I was taking medicine for it, but after over a week of this dull pain – which was confined to the right side of my face, predominantly my eye – I mentioned it to Angela and she agreed that something didn’t seem right.

It wasn’t high on my to-do list to make a doctor appointment with my primary care physician for yet another headache/eye related issue. But as the pain entered its second week and gradually started to increase, the red flag started waving. Soon, other issues emerged. My vision seemed a little slower. Almost as if I had drunk one too many alcoholic beverages…the room was slowed down a little bit. I began having problems with my peripheral vision and it started to hurt to look out of the corner of my eye. This was quite the sinus headache, I thought! As with most of my preceding symptoms, I just adapted to it. In meetings at work, I would intentionally choose seats that would limit the amount of peripheral vision that was required. And when necessary, I would literally turn a full ninety degrees in my seat to the side to speak with the individual straight on. Walking the halls at work became an odyssey, hearing my name, but not sure who was saying what, often I felt like I was in a Twilight Zone movie and it would only get worse.

One morning, as I was getting ready for work, it became unbearable to shave. I couldn’t stare into the mirror as I shaved my face without causing a severe pain in my eye. This was too much. I went downstairs and started doing some research and wasn’t surprised to learn that Crohn’s disease, which is an inflammatory disease of the digestive system, also manifests itself in other places on the body – including the eye. And there went the light bulb in my head. What started off as a slight sinus headache had progressed to impacting my vision and now I had something to tie it to Crohn’s. I called my GI doctor and he agreed that it could be related to Crohn’s and referred me to see an ophthalmologist right away – eye issues are not something you take lightly. My GI doctor get me an appointment with her that morning.

Within a few minutes she ruled out the problems I was having as Crohn’s related – my eyes weren’t red and no inflammation appeared to exist. After an exam, she referred me to go for a CT Scan and let me know that I either had an issue with my sinuses or my brain. Unfortunately, this is how a lot of my doctor appointments had proceeded over the years, particularly with my head pains. Generally, I was referred for a CT Scan (looking for tumors became way too common) and I’d go and have it done, head home, wait a few days for the results and then after they returned negative, wake up the next day and move on. So even when she painted those two options, one of which was just horrible to think about – although I do believe she laid the odds as 80% sinus related – I think I had become so desensitized, it was just a normal part of living my life. She did make mention that she’d prefer I have an MRI done, but out of fear of my insurance not covering it, we should just go with the CT Scan. This would prove to be a pivotal decision.

Over time, it became a bit comical (read: dark humor) calling for the results of my tests. When somebody is having a test done to determine if they have a tumor or other highly sensitive health issues, they generally want to know the prognosis from their doctor sooner rather than later. Maybe I’ve just succumbed to the internet generation, and I’d like to be able to log-in to my medical page and see the continuous and instantaneous status of where my x-rays/tests results are, have they been reviewed – things like that. Instead, I (with a lot of help from Angela) usually have to be proactive with multiple phone calls, waiting on hold, listening to the person on the other line shuffle through some paper, “um, how do you spell your last name again…hmm, don’t see anything, let me put you on hold...”, tick…tock…tick…tock, “um, Mr. Wentnickling? We got your results and it looks like they are negative. Would you like to schedule a follow-up?” I don’t recall exactly how things worked out with ophthalmologist – I do know that it was a much more pleasant experience than usual – but the diagnosis was the same; negative on both counts.

So there I was with my eye doctor at another dead end. She prescribed me an oral steroid to ease the pain and set up a follow-up appointment in a week. The steroid eased the pain immediately but my vision problems persisted and expanded. I started getting “floaters”, as I would learn they were medically called, but not your run-of-the-mill kind – they were multiple, constant and at one point, it appeared that a curtain was falling. It sounds insane and trust me, it was – but seriously, a curtain being lowered is the most accurate way to describe it. Blurred and double vision was always part of the package but originally I just assumed that was related to the pain. I rarely have any of these issues anymore. Occasionally, I get a sharp pain in my right eye (always the right eye) – you know when somebody says “I’d rather stick an ice pick in my eye”, well that’s what it feels like. The only other symptom that persists to this day are the bright lights. It’s only in a dark room, or walking around my house at night. Out of the corner of my right eye, I get flashing lights – think of a strobe light. I remember a few months ago at a follow-up with my doctor talking about the “strobe light” and unbelievably to me, I learned this might just be something that will be with me for awhile. It’s really the least of my problems right now, and if anything, is kind of entertaining.

During my follow-up after taking the steroid for a week, I was given my prognosis – optic neuritis (ON). As it turns out, ON is the most common symptom that occurs before somebody is diagnosed with multiple sclerosis. It was nice that I was able to finally attach an official name to one of my ailments and there was no ambiguity, further tests, anything. It’s funny, I remember one moment with my ophthalmologist….and I think about it a lot. I was sitting in her office after one of my follow-ups and she was doing some paper work, facing away from me. We were talking (almost joking) about all the issues I’ve had over the year – the “mystery” patient…and Mike “WebMD” Wentink came out and asked about multiple sclerosis. It was one of the various options Angela and I had looked into. I’d researched it and thought “wow, this sounds like me” and Angela had done the same. We’d never talked about it with each other, though – both of us didn’t want to stress the other one out – so we kept it to ourselves. So I took a shot with my eye doctor and this is the moment I replay in my head…she paused from writing, probably about 5-7 seconds, kept looking down at her notes, never looked up at me and then resumed writing. It was a long awkward pause and no response to my question followed. I took it as an irritation on her part, which I’m sure doctors feel a lot; a patient arming themselves with some wikipedia entry and thinking that qualifies them to put a medical certificate on their wall. But now as I look back, I think, was it actually an “Aha” moment? Probably not…but it sticks with me. The pain was gone but my vision problems continued for at least a few more weeks, it took a long time to get back to normal. I was very nervous, a lot of what I had read about ON mentioned permanent vision loss. One night, right before I went to bed, I told Angela how fearful I was of losing my vision and I told Angela “I’d rather lose my taste than my vision”.

The next morning I woke up, went downstairs and took my horse pills (4 of the 8 daily pills I was taking for Crohn’s) and as usual had a tall glass of water to wash it all down. But, something was off. I drank the water and I wasn’t satisfied – I just couldn’t quench my thirst. What was going on? I grabbed something to eat, and had my own “Aha” moment – my taste was muted. My taste wasn’t gone but it may as well been. Everything I ate had very little flavor, it’s as if somebody had taken a needle to all of my food and drained 80% of the taste out of it. My “Aha” moment that morning wasn’t that I had MS, but that this is getting serious and way beyond Crohn’s – I had a journal I had been keeping for my stomach problems, but that day started to expand to include everything that had previously or was currently ailing me. For the next few weeks, my muted taste continued; eventually I had a few days where everything I tasted was of today, my taste has returned to normal. I certainly learned my lesson, though, as cliché as it is - be very careful what you wish for!

Looking back, the weeks and months all blend together but this was around the time that my health began to truly unravel. The numbness and tingling intensified and I started getting what I later learned was vertigo. I remember one day vividly at the grocery store. I had just stopped by to pick up a few items but I felt like half of San Antonio was there, too. All the people, all the motion, I could barely stand up. I ran my cart into a table, into other people…I eventually just left. I felt like the store was spinning and I couldn’t maintain my balance. This would come and go over the next few weeks, some moments/hours/days worse than others. Not sure if it was the vertigo, vision problems, or just a combination of ailments that also led to a constant state of nausea. I had it before, that was part of my Crohn’s write-up, but this was constant. It reminded me of Angela in her first trimester of pregnancy, with crackers near the bedside, always needing a snack or something to get in my stomach to try to make the nausea go away. This remains even until today, thankfully it isn’t as constant and even better Angela found me some relief from a neat little product called Nauzene.

I was losing other faculties, too. Dropping things. Not fumbling around, being klutzy – this was different - I would literally be standing there one second holding something and the next second it would be on the ground and I didn’t know why. At work, from time to time – as a “stress reliever” – we’ll throw around a little nerf football. Professional QBs, we are not, but over time one becomes pretty apt at shooting the ball between cubicles, avoiding ceilings, sliding it through office doors…all while causing little to no damage. This story doesn’t end with me breaking anything; I never got the chance to. It was almost as if I didn’t have control of my throwing motion, my throw would basically go straight into the ground or something very close to that. MS isn’t only physical, it is also mental. At times, words would escape me. Nothing as minor as “dog” but certainly part of my regular vocabulary; regular enough for me to notice. Frequently, I’d be asking myself - why can’t I think of this word? I’d play $100,000 Pyramid a lot with Angela – giving hints and pseudo-direction until she solved my riddle. Words, names of people, places and so on at random times for no apparent reason. I’d learn to always have a thesaurus operating parallel in my mind while I talked with family, friends or co-workers – just waiting for it to occur again.

Clearly this was impacting my quality of life and, in my opinion, was well beyond Crohn’s. For me, losing my taste, really was the tipping point. I worried that I had been reading too many internet medical sites and was playing mind games with myself, creating the neurological issues I was having. But losing my taste? That’s not in my head, it is what it is. I had an appointment with my GI doctor and brought my list of recent ailments and told him that I might have Crohn’s, and that’s fine – but my biggest worry is that we are missing something. He agreed and suggested a second opinion and based on my ailments, I needed to go to the “mountain top”, so he wrote a letter of recommendation on my behalf to The Mayo Clinic. Hearing those words from him…communicating those words to Angela, was very difficult. It is one thing to joke about being a “mystery” to the medical community, but quite another to fly up to Rochester, Minnesota to be examined. A few days later we came home to message on our answering machine from The Mayo Clinic requesting a call back to set up the dates for my visit.

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