neurology | Big Owl's Tree

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.

I’ve been keeping low key an issue I’ve been dealing with for the last 7-8 months, but now that I think I finally have some answers, I feel more comfortable sharing it openly. Last summer, I started noticing a lot of unusual trembling and shaking in my left hand, and occasionally I would get a severe cramp in that palm which would draw my fingers together into an intensely painful knot. Then, I started noticing that the coordination in both my hands was deteriorating, to the point that both typing and handwriting required tremendous amounts of concentration. My balance and equilibrium also started to erode. Ever since my accident, my equilibrium has been a little off, but by the end of summer/beginning of fall, just walking required a lot of effort.

For a couple of months, I ignored the symptoms, hoping they would go away, but by mid-September, things had gotten so bad, I had to accept it and face it head on. At first, I really thought I had Parkinson’s. People who have suffered severe head trauma are 11 times more likely to develop it than the general population, and when I read the ten warning signs of the disease, six of them matched what I was experiencing. Fortunately, it was ruled out by three different doctors fairly quickly. The downside was that none of them could tell me what was going on. By mid-October, I had developed random muscle spasms all over my body. Sometimes, they were faint, other times intense, and there was no predicting when or where they might occur. By that point, I was also feeling indescribably bad. The closest I can come to describing it is that I quite literally felt like I was dying. It took everything I had to get out of bed, up the stairs, in the shower, and to work. By noon, I was so exhausted, I could barely concentrate, and even mundane tasks, like grading an essay or preparing a lesson plan, tasks I had performed thousands of times, took everything out of me. At one point, I was so scared, I actually wrote letters to my sons to be given to them when they’re older in case I was dying.

The neurologist I was seeing ran test after test after test, and all of them came back normal. After reading her dictations, I don’t think she ever took my symptoms seriously and truly seemed to dismiss me as some kind of hypochondriac. Those of you who know me well should know that it takes a lot for me to even go to a doctor, and I’ve pushed myself and worked through all kinds of injuries and illnesses over the years. Fortunately, my primary care physician did take me seriously and never treated me like I was imagining anything. He’s a good doctor who has earned my respect for his compassion and kindness. He knew I haven’t been faking anything or seeking pain meds or trying to file some bogus disability claim. From the beginning, all I’ve wanted were answers.

Sometime in late November/early December, I had a long conversation with my cousin who has been diagnosed with Celiac Disease, and she convinced me that because of our family history, I should consider that I might have a sensitivity to gluten. When I got to thinking about it, over the last couple of years I had begun to add breads, especially whole wheat, and beer back into my diet. For several years, because of avoiding carbs, I had almost completely eliminated gluten by default. Desperate to get better, I eliminated it from my diet again. For the first few weeks, I didn’t really notice any difference, but then, sometime in mid-January, I realized that the muscle spasms had vanished, and much of the trembling had dissipated. Also, that terrible feeling of dying was completely gone. In short, I feel like I’m on the mend.

Today, I saw a GI specialist, and while the results of the blood work haven’t confirmed anything yet, he told me that gluten sensitivity can create a myriad of neurological symptoms by depositing a kind of plaque in the brain. He also affirmed what I had begun to suspect, that I was already my own double blind study. 8-9 years ago, I eliminated gluten and got healthier. Then, I added it back and got sick. And he warned me that if I added it back again, the next time the symptoms would probably get even worse. There are no guarantees that some of the neurological issues won’t already be permanent, but I should know in 4-5 months just how much I will heal.

While I won’t say I feel completely healthy today, I feel well enough to function, and I can live with where I am now, even if I don’t get any better. Four months ago, I thought I was dying, so I’ll take it. To those of you who already knew much of this, thank you for all of your support and concern. For those of you who didn’t know, please understand that I didn’t want to make this widely known until I had some answers and knew what I was facing. Again, nothing is fully confirmed, but I’m fairly certain I’m on the right track. As I learn more, I’ll share more information, and I’ll try to write a few entries detailing the effects gluten can have on a neurological system. Until then, cherish your health and nourish your body.