February-12-2020| by: Kerry Jones
I am one of the lucky ones. But, in a way, I think I inadvertently helped make my own luck by contacting the Mayo Clinic when I did.
A little over two and a half years ago, my wife and I flew from our home outside of Kansas City, MO to the San Francisco Bay Area to visit family. When we returned and got off the plane in late May, my memory was almost completely gone except for a few instances from my childhood which, since I was 68 at the time, was a long, long time ago.
I started having seizures. At first, just a couple of times a day, gradually increasing to 20 or more a day. I had frequent feelings of nausea and incredible weakness (I couldn’t walk even an 8th of a block without being completely exhausted.) I contacted my physician and he tried to schedule me with the neurology department. They subsequently referred me to another neurological testing group, but scheduling with them was delayed while they were awaiting insurance approval. In retrospect, this may have been another stroke of luck, because, with my symptoms getting worse, I finally contacted the Mayo Clinic in Rochester on a Thursday or Friday in July. Apparently I used the right buzz words because they responded right away and said, “Can you come in on Monday?” Even though they were an out of network provider on my insurance plan, my wife and I jumped in the car and drove up there.
After being run through a battery of tests and being seen by several doctors, I was diagnosed with LGI1 Autoimmune Encephalitis, and placed under the care of Dr. Eoan Flanagan who began treating me with high dosage prednisone – this was about the first of August. I had my last known seizure in late October, though most of the other symptoms have persisted. At this point, I’m certainly not cured, but am adjusting to a new reality.
My memory is still very spotty. For example, as I am writing this, we are once again in California visiting family. While talking to my daughter, who just recently moved back here from Kansas City, I mentioned that I hadn’t been back to California since this had happened and that I was leery about flying even though I knew intellectually that flying had nothing to do with causing the disease.
My wife gently reminded me that yes, we had flown out here just last year. I have no memory of that. I lived in this area a large portion of my life, but as we drive around, it’s like I’m in a foreign country. I don’t recognize much of anything I see. The funny thing about my memory loss, though, is that I remember people, just not places or events. I’m currently in the process of being weaned off the prednisone and replacing it with Rituxan (I had my first Rituxan treatment last August.)
I have no idea what the future will hold, whether I’ll get my memory back or not. But I’ve determined to not let that impede my enjoyment of life while it happens. It’s hard sometimes when I’m with friends or family when the conversation turns to reminiscing about a past which I can’t remember, but I know there’s nothing I can do about that. My new motto is “Live in the Moment.”
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What you describe is so much what I experience, I had seizures
At work which luckily was University of Chicago, as I go around my town where I have lived for 30 years much of it looks so different and I don’t remember many of the changes, I also have ongoing memory issues, I was diagnosed and treated 3 years ago but will still forget simple things, I too am trying to come up with strategies to deal with my memory issues- rehab was poor at helping with that, I think they thought they could make my memory better, what I need is new ways to deal with my sucky new normal. My husband is also great at gently helping me remember things and always reviews things he thinks I may need help with. It has taken me 3 years to just start to make some decisions on my own. Reading your story sounded so much like mine, it was a relief to know that there was someone else who also had issues like me. Thank you for sharing it
Hello! Reading your post gives me a relief that I am not just over thinking or such. That someone is with me. I have been diagnosed with the same illness last April, 2018. I stayed in the hospital for almost 45 days. And I have experienced the same thing. There are also people, events and places I cannot remember.
Last August of the same year I continued by masters degree since I just got home and not doing anything… I am in the process of recovery but to my frustrations, I cannot cope with the discussion in class, I was also upset because I tried reviewing for our written examination and when I was already taking my exam, my brain is like a blank slate. I cannot remember anything that I have studied so I decided not to continue my study for now. I am 29 years old now, very much single. Living my life at the moment. I have accepted what happened to me. I am just thankful for my second life and now, I am trying to be a useful person as much as possible.