March 10, 2021 | By Amy Underwood-Crossley
Message from the IAES blog staff:
We are proud to bring to you the story of an AE Warrior and her journey thus far. Here is to an unlikely diagnosis path and those that have stood by her side!
My AE journey began quite unexpectedly in 2015! I was attempting to see a doctor for a consultation for spine issues at the Cleveland Clinic. All scans, x-rays, MRIs etc. were sent there for the consult from Ohio State’s Wexner Medical Center.
The surgeon at the Cleveland Clinic quickly told me he could not fix my spine, but he urged me to see a neurologist as he suspected something else was going on in my body. Something that required many tubes of blood and a lumbar puncture. Quickly, it was determined I have NMDA Autoimmune Encephalitis.
I went thru over a year of treatments that left me still very sick physically and with unrelenting psychiatric symptoms. I, then, contacted folks at IAES who were very helpful in referring me to another specialist. With a new doctor and new treatments, I have had periods of time where my AE seems to be in remission only to rear its ugly head and relapse. I suffer from seizures, tremors, drug induced Parkinson’s disease, mobility issues and lesions in my brain as a result of the AE. I have had many infusions, a complete hysterectomy, ongoing doctor’s visits and, at times, I am better.
Throughout my six-year journey with AE I have had my son and family by my side. My son has been my caretaker. It is an unusual teenage experience for my son, yet he is always here for me. I have hope that by telling my story more people will become aware of AE and I hope over time I will become much better.
Your generous Donations allow IAES to continue our important work and save lives!
Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org
International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.
For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.
Amy you are my beloved sister and the strongest person I know. I hope I’ve been a good sis and pray for you every day. Thank you for sharing your story.
Amy you are a true warrior. Daily I read you post. They bring me joy to see you beating this da$) disorder. We could all use the strength you have!