It began as a small tremor in my left hand, nothing major, just an occasional annoyance. Over time, it morphed into a severe cramp that drew the fingers of that hand into a tight knot, not as painful as one might expect but certainly unpleasant. Then, I started having difficulty with balance and walking. Sometimes, I would fall for no apparent reason, and just walking from my office to the classroom took every bit of concentration I could muster. I started having random, bizarre muscle twitches all over my body. Sometimes they lasted a few seconds, once nearly an hour. By mid-October of last year, an overwhelming feeling of death descended on me. I wasn’t in pain, but I felt as if my body were failing. From these symptoms, I feared the worst outcomes: MS, Lou Gehrig’s, Parkinson’s, or a brain tumor. Of course, I sought help and started seeing a PMC physician and a neurologist.
Let me say most importantly, from the beginning, Dr. Kenneth Justice of Parkway Medical treated me with compassion, concern, and understanding. Each visit to his office, he reassured me that we would find an answer, and he never once made me feel like a hypochondriac or someone faking an illness. Even as test after test revealed nothing, he continued to believe that what I was experiencing was real. I am grateful for how he treated me throughout the ordeal. He even called me one evening, after office hours, just to see how I was doing.
The same cannot be said for Dr. Karen Mullins at Knoxville Neurology Clinic. Never in my life have I met a doctor and a group of medical “professionals” so unconcerned for a human being’s health. After reading her dictations, I am convinced that she never once took me seriously and dismissed my issues as either imaginings or some attempt to scam the system, despite my repeated claims that I only wanted to find out what was wrong with me, never once asked for any kind of medicine, and insisted that I had to get well enough to function in my job. If you ever need medical assistance for anything, don’t waste your time with Knoxville Neurology Clinic or Dr. Karen Mullins. They are the worst collection of half-assed, pretentious, unprofessional jack-wagons I’ve ever encountered. At some point in the near future, I will be writing their office a letter expressing my disdain for their incompetence, and it will not be a pleasant correspondence. I was desperately ill and needed help, and they ignored the totality of what I was experiencing, instead focusing on some nerve damage in my left arm, an issue I’ve lived with for years without complaint. If a damaged ulna nerve can cause muscle spams in the abdomen, I guess I really don’t know anything about the human body. Yes, I’m bitter and pissed off at how they treated me when I was scared out of my mind that I was quite literally dying.
On Thursday, I received absolute confirmation of what I’ve known since late January/early February. I have a sensitivity to gluten that created a myriad of neurological symptoms because of my immune system’s attempts to fight off the reaction to the protein. I’m not a doctor and won’t attempt to describe the complexity of how this works, but my blood work confirmed that I have this issue. The good news is that since I’ve eliminated gluten from my diet, most of the symptoms have completely vanished, and the ones that linger are much diminished. I need to thank Dr. Limas Adams for taking me seriously and identifying the issue. I also need to thank my cousin, Janette, for pushing me to consider gluten as the culprit. Without them, there’s no telling how bad and permanent things could have gotten.
Today, I feel pretty healthy. As I’ve said before, I certainly don’t feel nearly 40. My balance, which has been an issue ever since my head injury, is as good as its been since the accident. My typing is much improved, though I still have some issues with fine motor skills. Overall, I feel pretty good. Sure, I miss certain foods, like pizza and chicken wings, but if eliminating those from my diet is what it takes never to feel the way I felt last fall, I think I can endure the sacrifice. If you have unexplained medical issues and cannot find any answers, please consider looking into gluten sensitivity, sprue, or Celiac. Some doctors are more knowledgeable on the subject than others, but Dr. Adams is an expert. If you’re in East Tennessee, I highly recommend him. Below are a couple of links to get you started learning more about this issue. There are plenty more if you do a simple Google search. That’s all for now. I have a book to finish before the semester begins.
Anyone who has suffered a severe head trauma can attest that sometimes, especially during high levels of stress, insomnia can be unrelenting. For me, when it hits, all I can do is either take my prescription that knocks me out or simply endure the sleepless nights. Starting Saturday night, because of the stresses of the last couple of weeks, my insomnia hit me with a vengeance, and from Saturday night until yesterday, I got about 20 hours sleep total. Unfortunately, my prescription ran out, and I haven’t had the opportunity to go to my doctor for a refill. All I could do was lay in bed, stare at the ceiling, and hope for sleep.
For me, when it occurs, my mind races out of control. No matter how hard I try, I can’t slow the wave of thoughts surging through my brain. Usually, these thoughts are about books four and five, imagining scenes and prewriting major plot points. I tell myself the alarm will be sounding in six hours and I need to stop, but the scene keeps replaying, over and over. I have to get up in five hours, but the story keeps gnawing at me. Four hours, no relief. Finally, sometime around 3:00 AM, I’ll drift off into a fitful doze, and when the alarm sounds at 6:00 AM, I feel as if I’ve not rested at all.
Some nights, like Sunday night/Monday morning, I give up, get out of bed, and attempt to be productive. Monday, I got to the office before 4:00 AM and graded 20 essays before my 8:00 class. By noon, I was so exhausted I could barely stand myself, so I went home and napped for about three hours before getting up and starting the whole maddening process over again. It’s frustrating to be completely exhausted, hardly able to function, yet lay in the dark room with a racing mind unable to drift off to sleep. During these episodes, a few times I’ve attempted to write, hoping that would ease the insomnia, but the quality of writing is pure rubbish, so much so that I often have to discard all of it and restart fresh.
I’ve lived with these bouts since 1989. For the first few years, they happened quite often. Then, I discovered that my natural sleep pattern post-accident is from about 4:00 AM to around noon. Something about the trauma shifted my internal clock, so for many years, I taught mostly night classes and wrote from midnight to 3:00 or 4:00 AM. While I was able to maintain this schedule I rarely suffered an episode and usually slept a regular 7-8 hours most nights. Unfortunately, today, my work schedule doesn’t allow for this. I have to be to work by 8:00 AM most days, so I have to be in bed and asleep by midnight to get at least 6 hours of sleep. Most of the time, I can do it, but I’ve found over the last 3-4 years that I’ve had many more frequent bouts with insomnia, especially when stress levels get high.
To further complicate matters, when I don’t get enough sleep, my neurological symptoms flare up as well. Since February, the worst of the issues have mostly subsided, but after a sleepless night, all of them come back. On Tuesday and Wednesday, I shook, trembled, and stumbled around all day. It was like reliving October, November, and December all over again. Today, after a good night’s sleep, I feel much better, and most of the issues have eased off. I’m hoping to get my prescription refilled next week and not have to suffer through another bout of this any time soon. That’s all for now. Hope everyone gets plenty of rest tonight.
There’s one annoying aspect of my neurological symptoms that’s still lingering. When typing, I have difficulty timing how long I hold down the shift key to capitalize certain letters. Slowly, it’s getting better, but with as much as I type, it’s fairly annoying. The letter “T” seems to be the worst. I have to retype it several times to get it capitalized. I never really noticed just how often I begin sentences with a word that begins with this letter until I started having the issue. Now, I’m more aware of just how often it occurs from the sheer volume of retypes I have to make.
Another lingering issue is getting my fingers to land with precision. Before the illness, I was a fairly proficient, self-taught typist who could average about 60 wpm. Now, I often miss the key I want. I’ll think “E” but my finger strikes “F” for no apparent reason, and some letters I have a hard time pressing fully, mostly “A” and “O ” it seems. Again, it’s getting better, and typing today is much easier than just three months ago, but it’s still frustrating to be slowed by something I can’t really control. Hopefully, as I continue to heal, these issues will eventually fade away entirely, but there’s always the possibility that I’ll have to deal with this for the rest of my life.
In the grand scheme, it’s a minor nuisance, but for a writer, it’s pretty frustrating. I’ve always prided myself on my command of the language and efficiency with getting my thoughts down on the page, whether typing or handwriting. Now, I’m having to adjust and reread everything more closely to make sure I didn’t type the wrong letter or reorganize letters or completely miss one. One positive from this adjustment is that I am paying a lot more attention to what I write as I write it, so I guess I should focus on the positive and not just accept the inconvenience as my current reality.
So if you’re reading an entry one day and see something I’ve completely mangled, please don’t judge me too harshly. I really do know the language fairly well; it’s just that my fingers and brain aren’t completely back in sync yet. As I’ve been typing this entry right now, I’ve had to make at least a hundred typo corrections along the way, and this one is less than five hundred words long. That’s how frequently I’m still missing keys. However, compared to just three months ago, that’s a big improvement. Then, it seemed like I had to correct every single word as I typed. At my worst, I was down to about 20 wpm. Now, I’m back up close to 40, so I’ll accept that progress and hope that the healing continues.
I wrote on here a couple of weeks ago about the neurological issues I’ve been dealing with for the last 8 months or so, and now that I seem to be on the mend, I want to share more details of what I went through. Back in 1989, I suffered a pretty severe head trauma and have lived with the side effects of post-concussion syndrome ever since. For the first year, I had a constant headache, and not your run of the mill one either. To this day, a headache has to pretty severe for me to even notice it. For about 10 years or so, I would occasionally lose focus on where I was and what I was doing. It would sometimes take me a minute or two to come back to full consciousness, but fortunately, that symptom faded with time. The three that have remained are sensitivity to light, trouble with word recall from time to time, and poor equilibrium. To me, they are minor nuisances that I’ve grown to accept and live with.
Several years back, I started noticing a random tremor in my left hand. It was infrequent and rarely lasted for more than a few seconds, so I figured it was just another effect of the injury. Then, last summer, that hand started giving me lots of issues. The trembling became nearly constant, and sometimes I would get a severe cramp that would draw my middle fingers together in a painful knot that took several minutes of rubbing to undo. By mid-September, the trembling had spread to my right hand, though not as severe or constant.
Around this time, I also realized that mundane tasks like walking, especially on stairs, writing, and typing took extreme amounts of concentration. I could still function, but it took all of my effort to do them. My muscle strength was fine, but getting my muscles to respond took everything I had. With each step, I felt like my legs were glued to the floor and didn’t want to lift. Just holding a pen steady was maddeningly difficult, and while typing, I would constantly miss keys or hit two at once. I went from being able to easily type 60 words a minute to struggling to complete 30. Also, I noticed that my handwriting on the board kept getting smaller, especially the longer I wrote. My arms and legs often felt like they were either very far away from my body or disconnected altogether. After doing some preliminary research on WebMD and the Mayo Clinic, I was terrified I had either Parkinson’s or MS.
Then, in late September/early October, the muscle spasms started. They would happen sporadically and without warning at odd places on my body. Usually, they were in my legs or arms, but a few times, they occurred in my abdomen and once on my upper lip. They weren’t painful, more just annoying, and they would last anywhere from a few seconds to several minutes. I never knew when or where they would hit.
Then, sometime in October, the worst symptom hit. The only way I can describe it is that I felt like I was dying. Some days were worse than others, but the sensation never went away. There were days when just getting out of bed took everything I had, and making it through each day at work required every ounce of energy I could muster. The feeling was so real and terrifying I actually wrote letters to my sons in case something did happen to me. I lost count of how many times I broke down crying from the fear. To further complicate the situation, the doctors had no idea what was going on. Every single test kept coming back normal, and as I wrote before, my neurologist treated me as if I were imagining the whole thing. I know I wasn’t imagining that feeling of death.
The whole experience was a nightmare, and I’ve never felt so helpless and alone. Today, fortunately, I feel like I’m healing. The death feeling faded within weeks of cutting out gluten, and the muscle spasms have all but ceased. I still have some trembling in my left hand, and my coordination isn’t 100%, but everyday I feel a little better. If you are experiencing any unexplained health issues, I urge you to look at gluten as a potential culprit. The effects of the sensitivity can mimic nearly anything, and it affects everyone in different ways. The cure is simple, and there’s about a 6 month healing process. If you are of Scots-Irish heritage, you are highly likely to have the sensitivity, so please, don’t ignore the possibility.