Chrissy's Journey with Autoimmune Encephalitis

In February 2021 Chrissy was diagnosed with autoimmune encephalitis (AE). Although they did not properly identify which specific type back in 2021, they did confirm the encephalitis she had caused the seizures and impaired cognitive issues that she started having. Her journey with this condition started with her experiencing a full-body tonic clonic seizure one morning back in February 2021. Prior to being effected by AE, she had never experienced a seizure. Following the seizure she was taken directly to the Ellis Hospital emergency room. Following her initial ER visit, she had several more ER visits, as-well-as; a 2 week long stay at Albany Medical Center, an in-hospital EEG monitoring stay at AMC, MRIs, CAT scans, two spinal taps and several visits with countless neurologists throughout the Capital Region, one in NYC and one in Boston. Throughout all of this she was prescribed several different medications by each neurologist as they attempted to control her seizures and cognitive symptoms. She eventually ended up on a treatment regiment including three different daily seizure medications and put back on monthly IVIG (Intravenous Immunoglobulin) treatments under administration of an epilepsy neurologist, who then left the practice. A Neuro at AMC has since kept her on the IVIG and tried tweaking her meds here and there with no improvements. This current treatment plan is essentially a “band-aid”, which is just partially controlling her seizures and she is currently having 1 to 2 seizures, about every other day, sometimes daily.

Now, in 2025, Chrissy continues to have daily seizures, chronic fatigue and frequent memory loss. I was able to find an Autoimmune Encephalitis (AE) Neurologist in NYC, and about a month ago Chrissy had: a 72 hour at-home EEG, another MRI, a new round of blood work, and a fresh spinal tap. Two weeks ago I took her to NYC to also start seeing a new Epilepsy Neurologist, who the AE Neurologist recommended (who Chrissy is now is seeing instead of the AMC Neuro). Recently she had a follow-up Telemed appt with the new AE Neuro and went over the spinal tap results. The results confirmed Chrissy has GAD65 Autoimmune Encephalitis (which AMC has dismissed from the beginning, although her GAD65 levels have been extremely high since she got sick in 2021). Her GAD65 numbers are still coming up very high in her blood and spinal fluid showing there is still active Encephalitis. Based on Chrissy’s recent test results, the AE Neuro is ready to admit her ASAP to Columbia NY Presbyterian in NYC. She will likely be there for 10-14 days, as they will be doing the following: a long-stay EEG, a specialized MRI, all while under a treatment plan of combined plasma exchange and steroids (alternating the two every other day for 6-10 days). The goal of the stay is come up with a more appropriate medication treatment plan for Chrissy that is intended to treat the GAD65 AE, which is imperative. Once the plasma exchange and steroids are complete they will determine which additional long term medication will be used in addition to her monthly IVIG, that will be more targeted at certain cells that are associated with the GAD65.

Chrissy does not qualify for any disability benefits or assistance, because although she is unable to work, she does not have enough work credits since she took on her dream job of becoming a full time mom when our children were born. Chrissy would do anything in the world to be with her children every moment, even when that means sacrifices. We had hoped that Chrissy would get disability to help with the financial strains we have been facing but even with a lawyers guidance we have not found it possible. So while our family continues this journey of healing and starts this next chapter of continued medical co-pays, driving to and from NYC, long hospital stays…...we are reaching out to ask for support in any way possible, thoughts, prayers or monetary donation if you are able.