An AE Story

Michelle agreed to write about her and her boyfriend's AE journey. Thanks Michelle.

Just when you think that things are going well, you hit that proverbial fork in the road that you never saw coming. Now that is not to say that things are not going well now, because they are fantastic under the circumstances. But I wanted to share a bit of our experience and what has brought us to this point. Prior to October 2016 I had never even heard of Autoimmune Encephalitis and now it is such a huge part of our lives and our every day. In mid-October, John became ill with what we thought may be a flu of some sort, as he was tired all of the time and confused and “a bit fuzzy”. He was still working and attempting to sleep as much as possible. But one morning, as we got up for work, he was no longer able to process his thoughts and what was most noticeable was that he was unable to walk. He was holding on to the wall, the furniture and eventually crawling. I helped him to the car and we went to Urgent Care where they were confused and diagnosed him with Vertigo, and sent us on our way with medication. After a few days with no relief, even with the medication, we went to the closest Emergency Department (ED) where they did blood tests, an MRI and CT, all of which were “normal” yet they saw how ill he was and admitted him for further testing and evaluation. Over the next few months, we were admitted 3 separate times, with multiple MRI’s, multiple CT’s and more blood tests than we could imagine. Eventually they did a lumbar puncture at the local hospital but still the doctors were unsure. He had elevated protein and low thiamine, but no clear diagnosis. It was at this time that the doctor suggested that they would move him to a subacute facility (nursing home) for rehabilitation, with no solid diagnosis. I firmly disagreed and requested a discharge, so that I may take him to the University of Penn via the ED. The discharging physician agreed that he needed to go and receive specialty care. We arrived at HUP at 10pm on a Tuesday evening and sat in the ED waiting room until 6am the following morning, before we could be seen. By this time, John was frustrated, confused, agitated and scared. I assured him that we were in the best place and it would be ok. The triage nurse placed a mask on him, as they were certain he must have Meningitis based on our description. This of course frightened him more, mostly that he would make me sick, if he hadn’t already. Once we were seen, we were immediately greeted by a full team of Neurologists. As a teaching hospital, they were extremely thorough and we were soon admitted as an inpatient. The following days were filled with many more doctors and tests. I was able to stay in the room with John, which was important as he was terrified and only my presence seemed to calm him. I was also his advocate as he couldn’t do that for himself any longer. It was at this time that we met Dr Eric Lancaster. As they were doing additional tests on John, Dr Lancaster came in to speak with me re: obtaining additional fluid during his lumbar puncture, for medical research, which would be sent to the Mayo Clinic and to Dr. Dalmau in Barcelona. I am forever thankful that we agreed to participate. Months later, we are still under the care of Dr. Lancaster and his team of neurologists. The initial antibody, was not recognized by the Mayo Clinic and seems to be a new find. They continue to study and have collected additional samples from John as they also treat his symptoms. After months of inpatient care, he was released to home just before Christmas and we are fortunate to live within one hour of HUP. With monthly IVIG treatments, and steroid therapy, John is progressing every day and continues to improve, heading toward remission. I sincerely hope to have another update in the coming months, as we begin to get back to our lives and our new ‘normal’.