One day, driving down the freeway I was surprised that I couldn’t see the exit I was trying to get to. I kept driving thinking I was missing something somehow. Twenty minutes later I realized I couldn’t see correctly. I turned around and realized I had traveled 15 miles too far. I went to work and had a horrible headache. I thought – time for new glasses. I called a friend, an eye doctor, who fit me into his schedule quickly.
After examining me, my doctor friend gave me stunning news, “You have swelling in your brain. You need an MRI.” Well, I thought, that is impossible. But, I told him I would try to get one done next week. The following week I had an MRI and the results were normal. I was diagnosed with Benign Intracranial Hypertension and was prescribed medication to treat it.
Well, OK. It got better. However, my family felt I was getting worse. I had begun to display some real problems with memory and other cognitive issues. I thought my family was crazy, over reacting – everything was fine. Soon after that though, I went in to see a neurologist because of my continued headache. Five minutes into my appointment I was diagnosed with migraines. So, all good. Nothing to be concerned about.
Unfortunately, the brain swelling didn’t stop and I had to go back to the neurologist. He thought, “…Maybe steroids – but that’s a risk. My symptoms could be caused by anxiety. To understand more, I underwent a neuro-psych evaluation. The results were alarming. It showed ‘frontotemporal lobe dementia’.
I was told to ‘get my affairs in order’ as ‘I had 4-5 years to live.’ I spent three months working all day only to come home and go to bed by 6 PM. It was around this time I went to see my Primary Care physician who advised me to go to the Mayo Clinic in Rochester, MN to get a second opinion.
The first Doctor I saw at the Mayo Clinic was able to rule out Frontotemporal lobe dementia by PET scan but said he didn’t know what the cause of my problem was. I had low B12 and was given B12 injections. A month later I couldn’t speak, I was seen at Mayo by one of their experts who diagnosed me with a rare type of receptive aphasia. A repeat PET scan showed damage in that area of my brain and an EEG showed slowing. Other tests were borderline.
I was admitted to the hospital and started on steroids 1 gram x 5 days. Then 1 gram 3 x /week. My family thought I was better. I thought nothing was wrong. Of course, they couldn’t understand anything I was saying. I kept up with steroids. The next type of treatment I had after steroids was IVIG. However, I had a severe reaction to IVIG with fever, rash and hemolysis. So, plasmapheresis was started.
One day I was at a mall and felt dizzy and almost passed out. I went to the doctor and it was discovered that I had 3 pulmonary emboli. Further testing confirmed that I had antiphospholipid syndrome. I started Cytoxan for 6 months. I really thought going through all this treatment was stupid because as far as I was concerned, I was in perfect health. After the Cyclophosphamide (Cytoxan) treatments, I was started on rituximab. I have been on a combination of steroids and rituximab ever since, approximately for 5 years now.
AN UNEXPECTED TWIST~
In 2015, my daughter suddenly developed psychosis (over a 20-minute period). Although we had been told it would be a 1:1,000,000 chance that she had autoimmune encephalitis, she was sent to Mayo for evaluations. Mayo diagnosed her with anti-NMDA-like syndrome, (it was a month after symptoms and no antibody had been found). She was treated with steroids, plasmapheresis and finally rituximab and is now a graduate student.
This disease is a horrible thing. I am frequently asked, “How do you accept that this happened to you?” I can now answer that question. It is the fact that my daughter survived autoimmune encephalitis. She was nearly in a coma when she arrived at Mayo where she was admitted, diagnosed and treated. Given that my health history played a role in saving her life, that is far and away enough for me to be happy about. Being an autoimmune encephalitis patient is not the end of the world. It is the world you make for yourself after it happens to you that is the most important.
I am five years into my autoimmune encephalitis journey now and I still get rituximab and steroids. I am grateful that I have made it this far. I am grateful for the IAES. So, should all of you be.