Before I start, a few comments on this post, my previous one and any future entries. First, MS is different for everyone. What I write is about myself, another person could experience the same symptom and it might impact them in a completely different way. If I refer to something as a nuisance, it could be debilitating for somebody else with MS. So, my intention is never to minimize the effects of MS, or vice-versa – to maximize my episodes for glorification or sympathy. This is my story and is intended to only be viewed through my eyes. I am very sensitive about this issue. I’m under no illusion that compared with many others sufferers of MS, I am very fortunate. And I do not wish to whistle past others, talking about how annoying it is that my leg tingles a lot like it has fallen asleep, when for somebody else that same feeling has a debilitating result. That is the reality of MS – you never know what each new day will bring…today’s nuisance could be gone tomorrow, or could worsen and alter my lifestyle completely.
Additionally, much of my symptoms so far have been and continue to be of the “silent” variety. This is common for many individuals with MS. To the public, we appear normal without any noticeable ailments; however, inside we are suffering from chronic fatigue, muscle weakness/spasms, abnormal sensations, vertigo and vision problems, to name a few.
I’m not a doctor. When I discuss clinical issues, it’s coming from an Accounting undergrad that never attended a day of medical school and in college got a C in Biology. And – this is very important to me – although I’ve had a lot of frustrations during my journey to diagnosis, my blog is in no way is intended to disrespect the medical community. Most of the doctors I have interacted with I hold the highest degree of respect for and am very gracious for their time. Not all of my interactions were pleasant, but go visit with any profession (especially with the frequency that I do with the medical community) – CPAs, Lawyer, Teachers – you’ll have some good experiences, you’ll have some bad. The reality is, a long and sometimes painful journey to an MS diagnosis is the general rule, and not the exception. You don’t have to look very far to hear very similar stories to mine; and I encourage everyone to do so.
That’s my quick soapbox – but there is one more point that deserves its own section. Most of what I write is strictly through my point of view. The terms “I” and other individual references are thrown around a lot. This writing style is part literary laziness and part an effort to streamline and simplify the reader’s experience. But something I have to make absolutely clear is that this is not a Mike Wentink journey. The support of my family and friends has been tremendous. Every email, phone call, text – whatever the communication medium – is greatly appreciated. My parents moving to Texas from Northern Virginia , at the time that they did, was a miracle in disguise. Angela has been with me every step of the way, often the tour guide, and it is her strength – not mine – that carries me each new day.
And now, on to the main feature…
It’s hard to know when it started. That’s one of the most frustrating things about MS; what is unknown greatly outweighs the known. The answers to how, what, when and where are mostly blank, yet to be filled in by medical research. As much as science has advanced in recent years to increase our understanding and improve treatment of MS, basic questions like “how did I develop this disease” and “what does my future hold” are unclear, at best. There are dozens of potential symptoms with wide-ranging individual impacts, from irritating to debilitating.
A few years ago, probably around 2005, I woke up and my toes were tingling – almost as if my feet were asleep. Didn’t really think much of it, but then about a week later it continued. It wouldn’t last long, sometimes a half hour, sometimes a few hours as my feet maintained this constant sense of tingling. It should have raised more flags than it did, but after several years of other random issues and symptoms, “mysteries”, as most of my doctors would refer to them, having something like this happen had become pretty standard.
What followed was generally the same each time…an issue would arise, I’d ignore it, then finally tell Angela, set up a doctors appointment, notes would be written, maybe some tests would be performed, wait a few days for results and then the circle would start again. Nothing would ever be resolved and the results would always be inconclusive. At some point, I just rationalized that stress with my job, and then with grad school, contributed to most issues. This made my issues even more difficult to confront. It’s hard to be a successful individual, husband and soon to be father when I can’t handle the stress of day to day life. I didn’t want Angela to view me as a complainer, or somebody that couldn’t handle the pain, so I just ignored a lot of what was going on. I truly thought everything was just part of life. “Growing pains”. My mental mind tricks were usually reinforced by doctors that followed this line of questioning during appointments:
1. Are you allergic to any medication?
a. No (check)
2. Have you recently lost a lot of weight?
a. No (check)
3. Have you been violently ill; vomiting, falling unconscious, etc.
a. No (check)
Ok, well, you are a 20-something healthy male who doesn’t smoke, take drugs, stays relatively active and eats moderately well, so….we got nothing. Come back when your eyes are bleeding or you weigh 120 pounds.
Although I’m adding a bit of humor, this is truly how Angela and I felt. I reached a point that I just didn’t want to bother anymore. It was wasting my time, Angela’s time, the doctor’s time and only adding stress, so it was just easier to adjust and/or ignore what was happening to my body.
Before we went to The Mayo Clinic, we requested all of my medical records going as far back as 1998. It was quite the walk down memory lane. I was astonished to see the various CAT scans, blood tests and more that resulted from doctor’s appointments. Even after reviewing over my medical records, I can’t tell you the exact order, or every ailment, but I do know that “cluster headaches” was one of the first mysteries Angela and I battled. I say cluster headaches, because that is the almost default prognosis that was made. It’s likely that this was the start of my MS, or at least one of the first symptoms.
It would occur out of nowhere; morning, day or night and at work, out with friends or at home. A sharp pain would jolt the right side of my head. By sharp, it would at least temporarily daze me, I’d lose my concentration and my reflex would be to lower my head into my hands hoping that gripping my upper forehead would help lessen the pain. Sometimes these would last for just a few seconds, maybe a little longer. This pain equal opportunity; interrupting conversations with friends, work discussions, Redskin games – it didn’t matter, my only solution was to absorb the pain, act normal and move on. For a time, it was pretty consistent – maybe not every day but probably a few times a week. Not enough to warrant any immediate trips to the doctor, but frequent enough to raise at least a flag. CAT Scans and MRIs would always come back negative.
The plural form of the tests was intentional. If I ever got a break from the headaches then something else would pop up. One day I was reading at home and began having issues with my vision. The words on the page would all start to blur together, letters reversing, on top of each other and I would get something - and this is the best way I could describe it to Angela and doctors – “kaleidoscope” vision. It was as if I was looking through a kaleidoscope, multiple colors would take form and everything I looked at would appear to be through the prism of a kaleidoscope. At work, I’d excuse myself to the restroom where I’d splash water on my face, rest my eyes and hope that upon returning to the meeting all would be normal. Eventually, this led to another doctor’s appointment, more tests and the same result – no conclusion. Cluster headaches, migraines, stress – who knows. Deep down inside I couldn’t buy it. I had no more stress than the next person although I’ve always had a lot on my plate; personal, career, continuing education…but so do most people and I have the luxury of a loving wife, beautiful home and peaceful life.
The doctor’s visits weren’t just about headaches and vision problems. Over the years, I’d have a variety of symptoms – some more common than others, and some that had nothing to do with MS…and others that probably did. I went through an extended period of night sweats. When somebody has the flu, night sweats might be a common ailment. But there would be no influenza attached, I’d be in perfect health, feeling great when I went to bed – and I’d wake up in a pile of sweat. Sometimes multiple occurrences during the night; but like my other symptoms it almost became routine for Angela and I. We’d have the towels ready. I’d go through two or three outfits during any given night and then the next day I’d wake up and go back to living the American dream. At one point, it was so regular that I wouldn’t even remember it happening – it’s like brushing your teeth in the morning or the commute into work, it just became second nature. Angela would shoot me an email during the day asking me how I’d felt…and if I remembered the previous night. It would take a few comments from her to jar my memory – oh yes, now I remember I sweated through our sheets again last night, for no apparent reason. Of course, the only conclusion was like everything else – maybe stress, maybe this…or that, but for now – a mystery.
At first, moving to Texas seemed to help my ailments. Not sure if it was the new climate, surroundings and culture keeping us busy but for awhile the head pains and night sweats went away. But soon, various things would start to pop up again; I’d never feel “normal” for long. The tingling started off in my toes but soon moved to my fingers, mostly my finger tips. Sometimes I’d wake up with a tingling sensation, or it would occur randomly throughout the day. Often, while taking a hot shower, I’d almost have no feeling in my right hand. On various occasions, I’d stand in the shower running the hot water on my right hand and then switch to my left and then back to my right again. I thought I was going crazy, at the time I had no idea what this meant.
One issue that has plagued me, at least since college is a very weak stomach. To this day, I’m not sure what is or isn’t related to MS – but one thing I do know, the gastrointestinal issues that I did face started me down the long and winding road to my MS diagnosis. So, in a (very) small way I am thankful for the years of agonizing stomach related issues. All anyone needs (and more importantly, WANTS) to know is that I had some pretty severe gastro issues dating back to the late 90s. Certain foods – especially richer, and higher in fat, would produce undesired results. I’d eventually steer away from anything with cream sauces, swore off milk, started drinking lighter beers and in general stuck to a pretty bland diet. Friends would think I was on a constant health food kick, including frequent discussions on the merits of light beer – but although trying to be healthy was important to me, that was a secondary objective. My primary goal was to avoid being curled up in a fetal position later that day or night suffering in agony as my stomach twisted and turned, which also included all of the gastro bells and whistles you can imagine. I’d always be amazed watching others enjoying rich meals, wondering if they faced the same problems I did…as usual, I just thought that they just handled the pain, the gastro problems and other various ailments tougher than I did. You only know what your body knows, and for me having these stomach problems had become the norm – so I just assumed this is how life was. As I opened up more to Angela about these problems and started to shed light on my ailments, she began to push me to look into them. As usual, I was hesitant. I didn’t want to make another doctors appointment, with additional tests and the same results – a big question mark. I already had shooting head pains, tingling toes and fingers and almost needed to build the mental stamina to add wide-ranging gastrointestinal issues to the list.
Since about 2006, I started noticing changes in my balance and coordination. I would never be mistaken for an Olympian, so to people that may have been playing sports with me; they were probably none the wiser. But I knew something was off. Maybe I was getting older. At least that’s what I told myself. But I would fall over a lot easier, I’d find it quite amazing – it was like I had no control of my bodily movements. And then one time I was out running in my neighborhood, just a leisurely jog and out of nowhere my left leg gave out. I was able to continue running but for a moment I lost all muscle control in my leg. It happened again. And again. I was going to grad school at the time, while working full-time so I was keeping some pretty long hours and sleep was pretty minimal. So I told myself I was just tired. Getting old. Not getting enough sleep. I would even try a little experiment. I’d make sure that I got plenty of sleep the night before a day I knew that I’d be playing some basketball at work. This would be the difference, I thought. Well, I felt a lot more refreshed and probably showed a little bit more energy out there on the court but my coordination and balance were still off. Nothing like I’d experience during the first few months of 2008 but it was again a few early warning signs. My loss of balance wasn’t specific to playing sports or jogging in my neighborhood – in another example of missed red flags, I became proficient at falling down stairs. It occurred a few times at work, even one time I feel up the stairs. On a few occasions this even happened at home. No major injuries ever resulted…maybe some bumps and bruises, and quite a bit of razzing from the people I worked with – and then I would resume my day, just like any other.
In the summer of 2007, my friend Mark, his wife Melissa and their son Jack came and visited us in San Antonio. Mark and I had known each other from high school and now here we were – the both of us professionals, husbands and fathers – we’d come a long way! Their son Jack was about seven months older than Vincent who was a little over a half year old. During the day we enjoyed watching the two boys interact with each other and the second night they were in town we decided to be brave, get a babysitter and go enjoy a nice dinner and a few drinks. After returning home, Angela and Melissa went upstairs to get some sleep while Mark and I stayed downstairs to catch up some more and enjoy a few more drinks. On the car ride home I had started to notice a dull pain in my left abdomen section and this continued up to the point that Mark poured us both a fresh drink. Slowly, the pain started increasing. I’d had similar pains before, so I started taking long, deep breaths, hoping and thinking the pain would go away. Soon, I started getting sharp pains down my left arm. And the increasing pain in my abdomen had become unbearable. I can’t remember exactly what Mark and I were talking about, maybe how this was the year the Redskins were going to win the Super Bowl again, but I had to fess up and let him know the discomfort I was in. What happened next is a product of the 21st century. Mark and I went into my office and started searching on WebMD for a solution to my ailments. I didn’t think I was having a heart attack, the pain was in my abdomen, but the shooting pains in my left arm – what was that all about? Was I having a stroke? We read about a variety of possibilities until we came across something about the spleen. That’s got to be it, I thought. I had Mono when I was in high school and maybe my spleen never recovered, was failing, who knows. By this time I was curled up on the ground of my office in severe pain. I told Mark that he had to wake up Angela; I think I need to go to the hospital.
And so began my almost week long odyssey to solve this mystery abdominal pain...