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Erin’s Story (Anti-NMDAR Encephalitis)

Erin's Story (NMDA Encephalitis)My name is Erin and I am 39 years old. I am a wife and mother of two beautiful girls. I was an ordinary woman leading a very ordinary life when in the spring of 2013 my life suddenly changed forever. The onset of symptoms were quite sudden and the symptoms were very strange. The first symptoms of my illness were confusion, paranoia, and hallucinations. I had never had any mental health issues during my 39 years so this was a very big concern for me once I started to exhibit these symptoms out of the blue. Once I was hospitalized things went from bad to worse. I started suffering seizures, lost consciousness, and became catatonic at times. I would sit in my hospital bed and repeat random things over and over again. I was in the hospital for several weeks and after over 200 tests the doctors were still not sure what was wrong with me. Finally, three and half weeks after being hospitalized I had my diagnosis of a very rare disease called Anti-NMDA Receptor Encephalitis. An auto immune disease so rare that it was just recently discovered in 2007. Most hospitals have never heard of it and do not even know the symptoms or how to test for it.

I was very lucky. I was saved by a book. One day during my hospitalization my husband received a call from his secretary after she had heard about a memoir written about another woman’s journey with my disease. My husband went online and read passages from the book and then looked up You Tube video’s that the author had posted of herself in the hospital. My husband knew instantly that this was what I had been fighting. He dropped everything and raced to the hospital to show my doctors. The doctors said my tests had already been sent to the clinic and this was something they were in fact testing for it. Later that night I had my diagnosis.

In fifty percent of patients with my disease there is an ovarian teratoma present. Given my deteriorating mental condition I was unable to make any decisions on treatment. Unfortunately, my husband had to make the decision to have both ovaries removed. The biopsy showed now teratomas. I was then placed on steroids which did not work. They tried IVIG which did not work. The doctors then tried plasmapheresis and that also did not work. Finally, my husband was able to contact the doctor who originally discovered this disease who was no longer in the United States but was now in Spain. That doctor worked with my doctors here and the decision was made to start chemotherapy. Once I started on chemotherapy I finally began to recover. After two months in the hospital and five weeks in an in-patient rehabilitation facility, I was lucky enough to rejoin my husband and girls at home. I spent two months in the hospital, however I remember very few things about my experience there at all. I have gone through six months of chemotherapy treatments, physical therapy, speech therapy, and occupational therapy to recover. I have returned to work, I am driving again, and I am on the road to recovery. However, with my disease there is always a chance of relapse. While the chance is there I choose not to focus on that but to instead focus on the future.

I felt it was important to share my story as my disease is so rare. However, there are probably thousands of people suffering with similar symptoms that are just being misdiagnosed. Awareness is key and having the support of family and friends is by far the best medicine.

Erin
New Jersey
Submitted 11/12/2013

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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9 comments

  1. This is my wife’s story what a amazing women you are my inspiration!!!! I am so proud of you and love You so much, Brian

  2. Erin you are an Amazing woman , who never stopped fighting, god bless you!
    It has been nearly 3 years for me I was 36 and struck down very quickly and hospitalized for 3 weeks, if it wasn’t for my twin sister insisting on a lumbar puncture, I might not be here today…. I was diagnosed with severe viral encephalitus , , it took me approximately a year to recover from the constant fatigue, but I am so grateful and feel like I have been given a second chance.

  3. what is this book name? please wright me.this very important.

    • The book is called Brain on Fire by Susannah Cahalan. The book was no diagnosis but it lead to the right tests which confirmed my diagnosis. I hope this helps.

  4. This is almost exactly my story without the terratomas and I was lucky enough to have a doctor on my case who had studied anti nmdar encephalitis in med school. This is so very encouraging. I’m so glad you shared! Keep up the good fight!!

  5. Your story is amazingly inspirational. I actually just read of this disorder the other day for the first time while googling (ovarian teratoma), Aren’t there other names for it as well? My gyn thinks my left adnexal mass I’ve had for 3 years is that and also thinks I have endometriosis can’t be sure until I can get my laparoscopy/cystectomy. Just makes me wonder about my mental issues which I have a hard time telling anyone about or talking about just because I feel like no one will understand and everyone will judge me. I don’t know if. you be up to it but if you ever want to talk you could maybe email me Id love to learn more from you. My email is jacobsjessica89@gmail.com

    Hope you are doing good(:

  6. Patrick McCormick

    My 17 year old niece is going through this right now. A beautiful young lady in the prime teen years. Everything set in on Christmas Day….My Sister (her mother) has spent endless nights in the hospital at her bedside, demanding compassionate care at all times. She will come through it but this is one of the strangest medical occurrences I have ever heard of. It just takes a healthy person and turns their world upside down. More awareness I feel may save many women.

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