My story starts in late 2011, in the fall. I was a 27-year old mom of one, married for 2 years and by most standards living a “normal life”.
I started noticing red patches that would creep up my chest, neck and face. It would be on one side of my chest and came on randomly. I was also having mild breast pain. I then started experiencing bouts of insomnia. My family doctor sent me to another, who did a biopsy thinking it was a form of breast cancer. Cancer runs in my family (both sides and many different forms), and I already had to have a hysterectomy (partial, I was left with my right ovary) because of cysts and scar tissue and bleeding problems, when I was 22. Needless to say I was beyond stressed out during this time, which lasted a few months. Around January my results were finally back – no cancer! It was such a relief, but there was no explanation as to what was going on with me.
By my birthday in March of 2012, I was increasingly stressed due to quite a few different issues, I was feeling worn out and sick 24/7. My insomnia was increasing, headaches and anxiety. My doctor thought it was stress related and prescribed me adhd meds and anxiety meds (at different times during the in between time of fall 2011 to spring 2012). Nothing seemed to help. I quit smoking and by April they said I was “withdrawing ” from nicotine, although they constantly asked me if I was on illegal drugs (not at all!) so I suspect that’s what they really were thinking. I even had a doctor later insist to a family member that that is what was happening during a massive panic attack. By April I started experiencing severe anxiety, panic/anxiety attacks and insomnia so bad, my husband took me to the E.R. of a psych hospital. They too said I was withdrawing and what was their answer? Pump me full of psych meds of course. My memory of these months is sparse, but I remember being on the floor with people talking about getting out and getting drugs, people who had overdosed on things and I was pretty scared. I told my husband (through sobs) that I didn’t belong there and he agreed but, the Drs had to hold me for a 5-day minimum. I remember talking to the nurse one day and not being able to understand what she was saying, trying to read a clock and not being able to tell time, it was all a daze and I believe (especially after what we know about some psych meds and our disease now) the meds are what through my brain into total chaos. I don’t know exactly what all was given but I know it included Haldol and other strong psych drugs, and withdrawal meds (which I obviously didn’t need). After coming home, I was given anxiety meds and told to “relax”.
Over the next couple of months, I was deteriorating fast. I started hallucinating, religion became all I could talk about (I have always been a Christian but I became obsessed). I thought I was possessed and it got to the point I couldn’t dress myself properly (I didn’t realize it). I had doctors tell my family I had to be on drugs. We were looking to move and on the way to look at a house, I started talking about how the sun was going to explode and we were all going to die. I don’t remember this but, I only remember feeling like the sun was so bright it was burning my eyes, burning my brain, I could feel the light inside my head. My final breaking down point at home was when my husband watched as I spun around in circles in our front yard with my arms out, he couldn’t get me to stop. It was then I had my first seizure and then he took me to a different E.R. I was admitted to the psych ward, where I again seized, I coded and they called a crash cart. My husband says that was the scariest thing he’s ever gone through, he thought I was dying in front of him. My family insisted it wasn’t a psych disorder, that I was “normal ” and seemed to go into this very fast, and that I just had a seizure so it had to be something else. They kept me in the neuro floor a couple of days then cleared me, called it a “pseudo seizure” which I was explained later “a seizure I had caused myself” (what?!? How?!?!) and that’s why I was cleared, there was no sign of any neurological disorder. My family wanted me transferred to the larger, better hospital an hour away and the psych doctor treating me denied it. He told my family if they didn’t believe I had a psychiatric disorder, they were part of the problem. They wouldn’t answer questions for my family and when they wanted to sign me out, the doctor brought in a social worker and said if I could sign myself out I could leave. At this point in my illness, I was catatonic- I had been posturing, lost control of my bodily functions, I couldn’t talk, read, write, I could barely walk. I wasn’t eating or drinking. At one point they moved me to an isolated room and wouldn’t let anyone in except to see me through the door. Thankfully, I don’t remember any of this.
I only have tiny bits of pieces of memory from then, but I remember all of my crazy, weird dreams I had while there. To me, the time was almost one long series of crazy dreams. I remember when I was first put on the floor, sitting in the darkened common room area, security guard standing in front of me, in front of the enclosed nurses station. I sat in a hard chair with a trash can in front of me, vomiting & shaking. I was so weak and confused, I can only remember crying because I couldn’t even pick up my hand to wipe the vomit and drool off of my mouth. I couldn’t talk to ask for help, the guard just stood there. I kept looking up at him and nothing. No nurses came to help, nothing. I don’t remember much else until over a month later when I partially came out of it. They walked me down a hall to a shower in a back room, it looked like the old shower in my elementary school gym. I started crying because there was a male nurse with the older lady nurse and I couldn’t take off my clothes so he did, I was put in a lukewarm shower and I couldn’t move and I was humiliated and frozen. This isn’t easy for me to talk about, and no one outside of my husband and mom know this, but if it helps anyone else to know what hell this disease causes, it’s worth sharing. After I got home, I had to relearn everything. I couldn’t talk well, couldn’t read well and couldn’t write at all. My hardest day was filling out school papers with my son and, I couldn’t write. Here he was going into 6th grade and he had to fill out his own emergency contact form, because I couldn’t write a single letter. After a while of seeing the psychologist the hospital made me go to (at a doctor’s office away from the hospital) he cleared me of all meds and said I had no psych issues. I would say it was a waste but it was in his office on the last day I was there, a few months after I got home, that I picked up a random magazine and saw the books to read article with small excerpts of books coming out. This is where I read a couple of excerpts from Brain on Fire, and I instantly felt I had to get this book. Something nagged at me so strong, I told my husband right away and ordered it. I read it cover to cover as soon as it came and, I knew right away that this was what I had just gone through. I told everyone about it, but since the disease was so rare pretty much all I heard back was “it really sounds like what happened but what are the chances?”.
Before long, I started relapsing (I didn’t know what a relapse was at the time, I just thought it was completely starting over). It was late spring 2013. I started having headaches, insomnia, anxiety, that escalated quickly. It then turned into ears popping, dizziness and feeling like my head was literally on fire from the inside. I would grind my teeth, make uncontrolled face movements, my legs and arms would shake uncontrollably. We made many trips to the local ER (not the one I had previously been), I printed out anything I could find on NMDA, and took it to them. They wanted to help and after being there a few times they were interested enough to look into it. They said they wanted to help but didn’t have the means. They referred me to the hospital an hour away that my husband wanted me transferred to previously. Unfortunately, that hospital didn’t think it was plausible and we ended up making many trips to that ER. EMS visits to the house, my pupils would be huge, I would “seize” but be awake, not able to control my body, at some points it felt like the blood was draining all to my feet and my heart was stopping. It was scary and it was hard when you just know in your gut what’s happening but no one believes you. Finally, after staying overnight in the car in the parking lot after getting released from the ER at the hospital an hour away, they hit me an appointment with a migraine specialist. After we spoke with the PA there, he looked up NMDA online as we sat in the office and waited, he did the clock test. He brought in the neuro who told us she was 99.9% sure I did not have this disease but since we had been there so much, she would order the LP. They started me on prednisone to reduce the migraines, and I got the LP, which had to be sent out because even though this hospital is #1 in my state and 3rd in the U.S., they didn’t have the testing capability.
After a week, my husband got a voicemail from the PA nearly yelling saying he needed to get me to the hospital there ASAP. I tested positive and they needed to figure out and start treatment immediately. I got my first rounds of Solumedrol and IvIg then, and they found an amazing neurologist who has been my doctor ever since. In the years since, I have relapsed so many times I’ve lost count. I’ve been through so many meds, hospital stays, home care infusions & am about to finish my 1 year of cytoxan (chemotherapy). I have never had a teratoma (I’ve had yearly scans). They have no known cause for my initial illness or relapses. My theory is the stress broke me down initially and the psych meds pushed me into madness. My relapses seem to be anytime I’m exposed to illness or dental cleanings/ work (sounds nuts but it’s true!).
I fight every day. I am now 32, and disabled because of this disease. Some days I can push through and feel ok, some days I can barely get out of bed. You learn to take the good with the bad, and it makes you appreciate the good a whole lot more than ever! I have to say a HUGE HUGE thank you to the support groups on Facebook. When I first found it (I think there was only one then lol!) there were not so many members, but everyone helped me through getting my diagnosis and how to care for my symptoms whole I was waiting for the Drs to come around. Since then, they’ve been so supportive and helpful and always there. Our NMDA /E family has expanded so much over the years and I’m grateful to have every single one. Some days they’re the only ones who will understand you, can laugh and cry about it at the same time and know what to say besides “I’m sorry”. They are all amazing and all so strong. I hope my story (although it took years for me to be able to write it) will help even just one person. I hope you can take away this: don’t EVER give up. Trust your gut, listen to your body, listen to your family, but don’t ever give up. We all go through different battles within this war going on inside of us or our loved ones, but we’re all united in it. Thanks for reading my story and if you ever have any questions I’ll help anyway I can!