Posted 8/9/2016 1:30 AM (GMT 0)
My husband was diagnosed with autoimmune epilepsy 4-1/2 years ago. He has GAD65 autoantibodies. Autoimmune Epilepsy involves many different types of antibodies. Little is known as to why or how. I've done a lot of research and good news for you... From what I've researched VCKG may be easier to treat as it has a better response to immunosuppressant therapies.
Like yours, our local doctors had no idea how to treat, nor did they know enough to diagnose. After multiple doctors and 6 months of 20+ seizures each day, he was diagnosed with autoimmune epilepsy at the Mayo Clinic in Scottsdale Az (we lived in Idaho at the time). I had written them for help as a last resort and they responded immediately with an invitation to come to Az to meet with a team of doctors. After the diagnosis, they gave us treatment information to take back to our doctors (VA medical center in Salt Lake City).
Immunosuppressant therapy is urgent ASAP. You must begin immediately as there is a better chance to reverse the autoimmune process the closer to onset. We did not have that luck. The VA delayed my husbands treatment due to "red tape". Once treatment began 15 months after onset, he failed at all immunosuppressant therapies. He's has undergone Solumedrol, CellCept, Plasma Exchange, IVIG and is now receiving Rituximab. Those are all immunosuppressants and all have had little to no effect for him. He's also tried multiple anti-seizure medications. Only one has worked to ease his seizures... Depakote. Depakote increases GABA in the brain and therefore calms the excitability of the seizures. Each person is different in response to medications.
We also had a "coincidence" moment happen 2 years into his illness... During a yearly exam and lab work, it was noticed that his testosterone was low. His primary doctor prescribed testosterone replacement therapy and after his first injection he went nearly seizure free for 5 days. The doctors were perplexed and in the beginning told us that it wasn't possible for the testosterone to be helping. Over the next 14 months and continued usage of the hormone, we fought for doctors to help us prove it was working. Finally, he was admitted to the University of Utah Hospital and underwent a 16 day EEG to prove that the testosterone therapy did indeed impact his seizure activity.
His ImmuneNeurologist subsequently wrote a medical publication on our positive findings. You may find the paper at the below link. If you are uncomfortable following the link, then GOOGLE "Improvement of GAD65-associated autoimmune epilepsy with testosterone replacement therapy"
Heres the link http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4537310/ I don't know if these things will help you, but I know enough about the "order of things" to write a book... haha! It's amazing how much you research when someone you love has been impacted with a rare disorder. If you have the financial capabilities to go to a Mayo Clinic near you, I'd invest in that as they seem to be the leading institution in this research.
Again, immunosuppressant therapy immediately is dire. Your doctor has probably already started you on Prednisone which is important to begin the immunosuppressant process until they have your plan mapped out. They should also run a paraneoplastic panel and PET/CT scan to rule out any underlying cancers. Some times these antibodies are indicators of other issues going on.
Feel free to respond with any questions you have. I hope I can help you with what I've learned in our experiences.