- CASE FILE
Mayo in Scottsdale AZ diagnosed with autoimmune epilepsy (anti-GAD65) 7 years ago. No cure or documented successful treatment.
ABOUT THIS CASE FILE
While living in Idaho Falls Idaho in Oct 2011 my husband, 44 year old Navy Gulf War Veteran (1987-1992), started having occasional dizziness. Jan 2012 he started having "episodes" lasting a couple minutes... distorted vision, traveling goosebumps from right temple down right side of body jumping to left leg and traveling up left side to his chest where they would stop, hotdog taste in mouth, immediate perspiration that would soak him in a minutes time, fatigue and immense fear. The VA healthcare system couldn't get him in to be seen (that's another issue I won't go in to now) so we went to my family physician. He ordered an MRI and labs and lumbar puncture. Labs/Lumbar puncture came back with oglioclonal bands and doctor feared MS. He started my husband on prednisone and we went on a journey to find appropriate health care starting with a local Neurologist (again VA wouldn't accommodate). EEG showed abnormalities but local Neurologist said "not seizures" and most likely migraines, but could not offer more assistance. MS probability was low and with the continuing daily episodes we sought out an Internal Medicine doctor. The Int Med doctor had no idea based on presenting symptoms and recommended we keep an appointment I had previously made with the Mayo Clinic in Scottsdale AZ. May 31st 2012 my husband was seen at the Mayo for 10 days. After many tests, labs and another LP my husband was found to have GAD65 antibodies in his serum and his cerebral spinal fluid. He was diagnosed with a rare disease Autoimmune Epilepsy associated with GAD65ab. We took this diagnosis and Mayo treatment plan back to the VA healthcare system and after much red tape and botched visits, my husband started treatment in Jan 2013. Over the years the doctors use the terms epilepsy and encephalitis interchangeably. My husbands seizures have progressed over the years, but they consist of partial complex (conscious) and tonic (unconscious). Treatment for this would consist of immunosuppressant therapy to combat the GAD65ab. My husband has failed on all immunosuppressant therapies and anti-epileptic medications with exception of valproic acid in which he's on an extremely high dose. They placed a Vagal Nerve Stimulator in Sept 2018 which provided no change in seizures. He has continued on Prednisone 35-80mg daily and testosterone every 7-10 days. Testosterone was a coincidental finding that lowered his seizure severity... mechanism of action unknown. A medical publication was written on his case regarding that topic. After 5 hospitalizations for status epilepticus and psychosis during June 2018-May 2019 (once with being intubated for 5 days), doctors opted to try another immunosuppressant at our request. They chose Basiliximab upon Mayo suggestion. They also increased his valproic acid and added a 3rd anti-epileptic medication, Phenytoin. His seizures are less severe lasting only a couple minutes in most instances but still having 5-15 daily. A full list of medications and failed treatments can be given upon request. He has needed rescue medication on 3 occasions in the past month for status epilepticus (seizures lasting longer than 7 minutes). My husband is quite healthy in all other regards. His short term memory and executive cognitive skills has declined over the past 7-1/2 years. Doctors say there is little documented treatment for this antibody. They say no known cure so they just try to make him comfortable by treating seizures which hasn't been successful. GAD65 is intercellular meaning that it "hides" within the cell. It can be present in low titers but rarely present at high titers without disease. My husbands titers are off the charts "high". Illnesses from GAD65ab are not always the same. Is it a cause or is it a marker for something else? This has changed our lives on more levels than you can imagine. We moved to Florida full time in 2016 where he has better VA care not to mention that we needed to downsize due to financial constraints. My husband needs 24/7 supervision to protect him from falls and psychotic episodes so I am now his caregiver. He struggles daily with the grieving process of who he once was. He's thought out his "exit" plan, but I reinforce daily how much he is needed in this life.