Until August 2014, I considered myself a pretty normal 22-year old. I felt young, strong and completely healthy. I even took advantage of my good health and did heavy physical labor working in the landscaping business. As any young person, I never questioned if I would lose my health. But in early August I noticed a slight pain in both my eyes, that would be triggered whenever I tried to gaze around me without moving my head. Eventually, my perfect 20/20 eyesight began to get a little blurry. At about the same time, I started to experience a little tingling in my left leg. I thought maybe I pulled something while working- I never once thought that my eye issues and leg sensation were connected. After these symptoms persisted for a few weeks, I started to get concerned and made an appointment with a general family physician. I was told that the eye pain and leg tingling, along with some mild back pain I was now feeling, were all probably due to “inflammation” and I was given some basic anti-inflammatory, over-the-counter pain killers. After about a week, my eye pain worsened, as did my back pain. The tingling in my left leg turned to pain, and my right leg began to follow the same pattern… I knew things were not right. I stopped working for awhile and I saw another family physician, who once again said that I had “inflammation” and maybe glaucoma. I was referred to an ophthalmologist and a neurologist. At this point my eyes were bad (especially my left), I could barely see. My back ached. My legs were in so much pain I could hardly walk. I also started to notice that I wasn’t able to use the restroom. On August 29th, just a day after my last doctor’s visit, I woke up, got out of bed… and fell to the floor. I couldn’t use my legs at all. As much as I hate to say this word, I was paralyzed from my belly button to my toes.
After a 12 hour stint in the ER, in which the chief of the ER department ordered countless blood tests and a spinal and brain MRI for me, I saw a neurologist. He performed the first, after which I would have dozens, neurological assessment. He told me he believed I had transverse myelitis and that to confirm I would need a lumbar puncture, or spinal tap. He described other possible diagnoses to me, including multiple sclerosis (MS) and Devic’s disease, aka neuromyelitis optica (NMO). A current diagnosis could only be made after the results of the blood tests, spinal tap and MRIs. I was terrified.
The next couple days I spent in a hospital bed, waiting for the neurologist to determine what exactly was wrong with my body. In the interim I was receiving high dose intravenous steroids to suppress whatever “inflammation” was messing with my nervous system. The neurologist finally stepped in and ruled that I had NMO. Based off of my normal brain MRI, spinal MRI showing lesions in my spinal cord, case of optic neuritis, and presence of white blood cells (lymphocytes) in my cerebrospinal fluid (CSF), he was able to make this diagnosis. While he spouted a lot of details, I was just more focused on keeping a good, confident attitude to take on NMO.
I was moved to main campus Cleveland Clinic so that I could be seen by multiple neurologists who may have had a better chance of seeing similar patients with such a rare disease. While my eye sight was getting better, I was still unable to move or feel my legs, or even much below my belly button at all. To expand my treatment and progress, I went through 5 rounds of plasmapheresis, or plasma exchange (PLEX), in order to purify my body of all the bad inflammatory components that were creating the problem. After the first round of PLEX, it was magic- I could finally move my legs a bit! Being able to show off my “wiggling,” a little movement of my legs, to my friends and family was unbelievable. At that moment, I was confident I would walk again.
After nearly two weeks in the hospital, I regained my ability to lift my legs ever so high and could now slightly feel below my belly button again. My next task was to become strong again in physical therapy at a physical medicine and spinal rehab hospital. I was becoming independent after nearly a month of relying on nurses and family members to help me dress, go to the bathroom, shower… basically all daily routines. But now, I didn’t need that kind of help anymore- which further uplifted my spirits. However, I began to notice a distinct eye irritation and after another day I realized I was once again experiencing slight eye pain and blurriness. I was adamant about speaking with my doctors, who decided it was best for me to receive attention of a neurologist and ophthalmologist, to determine if I was experience a relapse of the optic neuritis component of NMO. Indeed, I was- possible due to the lack of any immune suppressant. At this point, my family and I realized we had to be vigilant about my healthcare. I had to become even better at listening to my body and attending to it. With another bout of intravenous steroids followed by oral steroid tapering, my eyes recovered. I refocused my attention on recuperating. After a total of 6 weeks in this intense inpatient physical therapy, I left the hospital using not a wheelchair, but a walker.
I’m now fully recuperating at home, with the care and attention of my family and friends. I’m becoming increasingly independent and ever more hopeful. I met with my Cleveland Clinic neurologist at the Mellen Center, to determine my treatment plan, maintaining low level oral steroids and possible enrollment in a clinical trial. I’ve transitioned from a walker to a cane, and think I have a nice strut to my walk now. While I have my bad days, intense back and leg pain mixed with spasms, and the occasional lack of control of my bladder, I live on the good days and the progress I have made.