For many years, I’ve experienced unexplained “episodes” that included partial paralysis and clusters of neurological symptoms. Although doctors suspected an autoimmune cause, extensive testing has never produced a diagnosis. In the past, high doses of certain vitamins and minerals that support nerve health — along with acupuncture — would eventually help me recover from an episode. For about five years, I went without any major events. This July, everything changed. The episodes returned suddenly and with far greater intensity. I spent most of the month barely able to function, with several instances of paralysis. Since then, I’ve never fully recovered. Instead, I’ve been living with constant, significant fatigue and varying clusters of neurological symptoms. After catching a flu-like virus in late October, my condition escalated dramatically. The episodes returned more intensely than ever, sometimes causing full-body paralysis for up to 40 minutes, or partial paralysis for up to 2 hours. From there, things worsened. I began having prolonged periods of what doctors are calling seizure activity. I remain conscious during these events, but I have no control over my body. At different times I’ve experienced: - severe tremors in my arms and upper body - partial paralysis in my right leg - trouble speaking - difficulty controlling my head and eye movement - inability to walk during some episodes - extreme shortness of breath & shallow breathing After two ER visits, I was hospitalized at Bronson in Kalamazoo from November 6th–9th. I was discharged without a diagnosis and without a clear plan. My mom then drove me to the Cleveland Clinic ER, where again we received multiple theories — some hopeful — but still no diagnosis. I do, at least, have a follow-up scheduled with the neurology team at Cleveland Clinic. I’ve been home since Monday, November 10th. One important detail: I have not yet had an EEG. So even though the MRIs show that my brain looks healthy — no lesions, no tumors, no abnormalities — no one has confirmed whether the seizure activity is coming from my brain. Some doctors believe the episodes may not be epileptic seizures but another kind of neurological malfunction between the brain and body. This is still unknown. There are conflicting theories. Some believe this could be a neurological virus or an autoimmune disorder. My primary care doctor is strongly urging testing for Guillain-Barré Syndrome, but the neurologist will have to order the spinal tap required to confirm or rule it out. There is also a possible issue with insurance at the Cleveland Clinic. I received one call saying that because I’m out of state, they may not accept my insurance and I may not qualify for financial assistance. However, this call came while I was having a seizure and it wasn’t from the neurology department — so the situation is still unclear. If the neurology department also refuses insurance, I may need to fundraise for my care. Right now, I’m in a constant cycle of seizures with varying intensity. I have been given short-term medication to soften the symptoms, but it does not eliminate them. It is only meant to help me function until I’m under the care of a neurologist. The seizures themselves are not believed to be immediately dangerous: • I remain conscious • They are not grand mal • MRIs show no evidence of brain damage Still, there are many unanswered questions and many hurdles ahead. I’m trying to understand what my daily life will look like — whether I can work, whether I need disability, how my basic needs will be met. I am no longer able to drive, which has been incredibly difficult. It feels like the life I was working so hard to build has been taken away, and I am moving through each day one tiny step at a time. Right now I need a lot of support, especially with transportation to medical appointments. As time passes and I learn more about how functional I can be day-to-day, I’ll better understand what additional help I may need.