@uncledrew Hi Tracy, many things about your experience ring true also with our daughter’s. She also began having issues in 2021. It started in June of 2021 with a form of vertigo called vestibular neuritis, and continually worsened. She started in late 2021 receiving physical therapy for the vestibular neuritis and at first it seemed to help. But by early 2022 her health was deteriorating quickly. She was diagnosed in early 2022 with Hashimoto’s Thyroiditis. While under the care of the neurologist (the one who eventually left her case and left her without a doctor) she had a lumbar puncture and he concluded from that test that she had Hashimoto’s Encephalopathy. (Were you diagnosed with Hashimoto’s Thyroiditis or Encephalopathy?) By the time of the diagnosis and his subsequent leaving of her case it was May of 2022, and she was suffering greatly, both physically and mentally (but to our knowledge she didn’t hallucinate). We met her first neuroimmunologist in late May of 2022 and within two weeks we had the Anti-Dppx diagnosis. First, they tried steroid infusions, and they really didn’t do anything for her. Then in early June of 2022 she was hospitalized for several weeks and given plasmapheresis treatments. They brought her immediate relief, but unfortunately not long-lasting relief. In July of 2022 we began the fight with the insurance company for the Rituxan and IVIG treatments. Eventually a foundation was able to help with the Rituxan. Unfortunately, the IVIG has never been approved by the FDA for many of the autoimmune encephalopathies and therefore foundations cannot supply the IVIG treatments they are considered off-label. She had additional hospitalizations and treatments with the plasmapheresis while trying to get the Rituxan approved and started.
When our daughter was admitted to the hospital in June of 2022, her first hospitalization, she was given the Berg test and was one point from being classified as needing a wheelchair. She was barely able to walk, barely able to communicate, had lost half of her body weight, had no memory and was in constant mental health distress. Prior to her illness she had graduated college summa com laude, received a master’s from Purdue (all A’s) and was working on her private pilot’s license. In less than a year, she was diminished to the point of needing constant care and supervision.
While the Rituxan brought her relief, it is the IVIG treatments that have really turned her life around. She recently completed the Berg test (same one she took in 2022 and almost needed a wheelchair) and received a perfect score. This week she approached the 4-mile mark on walking outside. In the past few weeks, she has started taking the initiative to do physical and cognitive exercises for herself. About two months ago she started using her iPad. She hadn’t touched it in almost two years. She also still struggles with memory and balance issues. She communicates so much better and has relayed to us that she really has very little memory of the past two years. She recently turned 30 and is still uncomfortable interacting with very many people.
We would love to know the name of the medicine your doctor is considering. We would pass it on to her doctors too. We really appreciate your reaching out to us. We feel like there are so many more questions we would like to ask you. It will take a while to digest all this information. This has been a terribly lonely journey. While others sympathize, no one can understand the anguish of this disease unless you are dealing with it. We hope we have answered some of your questions and definitely would like to stay in touch.