On August 25, 2018, my wife Tammy and I were getting ready to leave for her parents house, to celebrate her Mother’s birthday. I squatted down very low in the kitchen, of all things to take a video of our cat Neptune, eating tuna out of a can. When I stood up, I felt an incredible rush of pain running from my neck, around the top of my head and behind my eyes. It staggered me so badly that I had to grab onto a cabinet to balance myself. I have gotten many head rushes after standing up too quickly, but never had I experienced one painful or intense, as that was. I didn’t realize it in that moment, but it was perhaps the most important moment in my life, it was a turning point in my health. From that point in time, I would be sent down a spiraling path that would eventually seem hopeless; before I would stumble upon a potential cure, then gradually work on putting my life and career back together. It would take months for me to feel like I was recovering. Then just as I believed that I was getting back to normal, I would again suffer from another rush of pain, incoordination and the reality that I was still far from recovery. The initial period of time following my injury was scary and confusing, yet it was far from the worst period I have endured along this journey. That initial crisis is what I write about in this post.
Within hours of that incident, I began to have difficulty walking, I was clumsy and my legs were weak. The next day, I felt even weaker and had trouble staying mentally focused for longer than several minutes at a time. Within days, I couldn’t walk very far without a cane, and walking up a short flight of stairs left me so uncoordinated that I could fall over with even the slightest of missteps. I had never been so weak or clumsy in my life. I emailed my Neurologist to let him know what I was experiencing. Dr. McCarthy’s staff contacted me the next day, to set up an MRI appointment and to fit me into his schedule that week. He wanted to see me right away, in order to assess whether this was serious or not. During my office visit, he performed various neurological tests and believed that I had not suffered any trauma to my spinal cord, and that there were not any other clear signs of illness or disease. The next step was to do the MRIs and wait for the results.
In the days between the office visit and the scheduled MRIs, my condition worsened. I was so clumsy that simply turning my head would make me stumble and nearly fall. My condition was beginning to become hazardous to my health. It got so bad that Tammy took me to the Emergency Room one evening, which expedited my MRIs due to my worsening symptoms. The following week, MRIs were taken of both my brain and cervical spine, a procedure requiring me to be deep inside the MRI chamber for almost 90 minutes.
Following the procedure, I had so much difficulty standing and walking that I had to be wheeled to my car by a staff member from the MRI department. Strangely, I was able to drive home without much difficulty, but once I was standing again, I became uncoordinated. I walked like I was heavily intoxicated, a condition called ataxia, which can have many causes. It can be from benign conditions or from something very deadly. The results of the MRIs showed nothing out of the ordinary. With no obvious sign of anything serious, the hope was that I would recover with extra rest. However, over the next two weeks my ataxia did not improve, it worsened.
I continued to work with my clients, but found it significantly harder to do so. Lifting moderately heavy weights or getting up and down from the floor, an important part of my job as a Personal Trainer, intensified my ataxia. One day, I was doing mild exercises with a 88 year old client, marching in place while holding onto a balance bar. As I lifted one knee, then the other, I began to lose control of my legs and my feet would clumsily slap down onto the floor. My 88 year old client, who has several serious medical conditions was performing his exercises better than I was. This became a daily problem, forcing me to adapt many aspects of both my personal and work life. I began limiting how I demonstrated exercises, utilizing more standing exercises, to avoid aggravating my condition. My job became more difficult in strange ways, as well. Walking down the hallways of an assisted living facility, where I have several clients, triggered intense ataxia episodes. By the end of the hallway I would be so clumsy that I would need to use the hand railing to steady myself. Something about those hallways was a trigger, it did not make sense to me at the time. Even my ability to do the administrative activities related to Personal Training were impacted. Looking down at a clipboard would make me lose my balance, and I was struggling to write legibly. The physical and administrative impacts of my injury were beginning to take a toll on my ability to make money.
After two follow up visits with Dr. McCarthy, and no improvement, we were still without a diagnosis. When lying down I was only a little weaker than normal, when standing my legs were very weak and clumsy. Climbing and descending stairs triggered my ataxia, but driving was only slightly harder. Even Dr. McCarthy was confused, as I would realize during one office visit. It’s never a good sign when your neurologist does several tests, pauses, then mumbles, “hmm”, as he did on multiple occasions. I thought to myself, “yeah Doc, I don’t know WTF is going on either.” Seemingly at a dead end, Dr. McCarthy referred me for a second opinion by another very experienced Neurologist, Dr. Mudivarthi, who ultimately became my primary neurologist. Perhaps he had missed something that she might catch.
During my first office visit with her, Dr. Mudivarthi performed many of the same tests that Dr. McCarthy had, as well as some additional tests. Once again, we got inconclusive results. She referred me for additional MRIs, of both my thoracic and my lumbar spine. With those results, we would have a good view of my brain and entire spinal cord. Any abnormality seen in my lower spine might reveal why my legs were so weak and clumsy, but my upper body was not. As hopeful as I was for a conclusive diagnosis following the second round of MRI’s, the results revealed nothing extraordinary. This was a relief to me on one hand, but it made the situation even more confusing and worrisome, on the other hand. There was relief in knowing that I did not have any tumors or visible signs of a serious disease, but we still didn’t know what I was suffering from. Now, some routine conditions had been ruled out by the MRIs. Though it was unlikely, the concern was that I might have some kind of degenerative disease, such as ALS, Multiple Sclerosis or Muscular Dystrophy. My combination of symptoms was so strange that nothing could be ruled out yet. With how disabling my condition was back then, it was very easy to start focusing on the worst case scenarios. Dr. Mudivarthi scheduled a nerve conduction study and muscle function tests, to hopefully eliminate these serious diseases as the cause of my malady.
I hoped that I could get some answers quickly, so that I could make a rehab plan and move on. I never imagined that it was going to take so long to figure out what was causing my problems. I also didn’t forsee how many ups and downs I would have to experience before getting to a place where I felt like my health was headed in the right direction. Throughout this entire process, I have had to ‘wait and see’ many times, running into dead ends over and over. In my next post I will share how this became confusing and a source of angst. I hope that my story will resonate with others who are dealing with chronic illnesses and injuries.