Finally, some good news to share with everyone.
I just got a favorable ruling from Social Security Disability that I meet their criteria due to my having anti-NMDAr Encephalitis and other autoimmune conditions.I initially applied in 2015 and after a long battle with appeals and 2 hearings, I won!
Here are my take home messages:
1. Apply for yourself, have someone do it for you, or apply for your loved one as soon as there is a diagnosis.
2. Report all medical conditions, not just autoimmune encephalitis. Surprisingly, my case was approved more for my Crohn’s Disease and other autoimmune conditions than the anti-NMDAr, but all of these conditions were complicating each other.
3. Don’t give up if you are at first denied. Appeal. Hire an attorney that only takes a small percentage and only if you win. I think mine only made $6000 from my case.
4. Make sure your doctors write in the record the things you tell them about. Like fatigue, confusion, anxiety, depression, slurred speech, vision issues, etc. and give them exact examples of how it affects your everyday life. Better yet, write your list of symptoms out and ask/make them file it in your medical record. Or, track a “typical day” for a week or longer and show it your doctors.
5. Have others who live with you or observe you, tell the doctors what they see with their own eyes or ask them to write it down so the doctor can put it in your record.
6. The biggest thing I learned in this process, is that they don’t award disability based on just a diagnosis. It has to be in your medical record how it is affecting you day to day to the point that you “couldn’t sort pencils” as my attorney always said. As we all know, before encephalitis is properly diagnosed and appropriately treated, “sorting pencils” is probably not even possible. (It still may not even be possible during recovery either for that matter!)
Keep up the good fight.
Oh, and my judge read the book “Brain in Fire”, so awareness is spreading everywhere!