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New approach to Treating Drug-Resistant Epilepsy
Epilepsy & Seizures | Last Active: 13 hours ago | Replies (9)Comment receiving replies
What about autoimmune refractory epilepsy? I have had refratory temporal lobe epilepsy for over 20 years. 4 years ago, diagnosed with GAD65 autoimmune mediated epilepsy or possibly encephalitis. Apparently, there is no cure. What's so frustrating is the lack of knowledge about my situation, and autoimmune epilepsy. Have tried just about every anti-inflammatory med available (steroids, Cellcept, various infusions (including IVIG, Actemra injections) and nothing helps. My doctors at NYU and Mayo are stymied,
particularly with respect to the GAD65 aspect . I rarely see autoimmune epilepsy discussed, much less in context of GAD65. Hopeless and defeated. Cognitive decline accelerates as brain damage from seizures and many strong meds continues.
Replies to "What about autoimmune refractory epilepsy? I have had refratory temporal lobe epilepsy for over 20 years...."
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Hi @cathy5161
I am sorry to hear about your condition. Indeed, it is the first time I have heard about autoimmune epilepsy in our group. My knowledge of this kind of epilepsy is limited, never having heard or read about it before. Curious to know more about it, I have searched some sources and share some links with you and the group.
https://www.epilepsy.com/causes/autoimmune
https://www.cureepilepsy.org/webinars/identification-and-treatment-of-autoimmune-epilepsy/
Have you consulted with an immunologist yet? I am currently dealing with some inflammation issues myself, and my doctor has referred me to an immunologist for further investigation. I understand that an immunologist is one of the medical specialties that treat autoimmune disease, which might be beneficial in your case.
I understand how hard the epilepsy journey can be. It is a disease with no cure, presenting many challenges for many of us. When I began my epilepsy treatment in 2019-2020, I also experienced feelings of defeat and hopelessness. The support of my neuropsychologist, who coincidentally has an autoimmune disease herself, was instrumental in helping me regain my strength. Perhaps similar psychological support could be helpful for you as well?
Sending you positive energy and wishing you the best.
Chris (@santosha)