@teach3foruyahoocom
I’m so sorry to hear about your challenges with MOGAD. I looked it up. Never great to have rare disorders either. I have HNPP which is also rare. To read about it they only talk about the 85% of people with mild nuisance symptoms. Frustrating. For the other 15% it can be pretty challenging. My most limiting issue is chewing, swallowing, aspiration issues that really limit what I can eat. It can mimic myasthenia gravis for one thing plus a host of other neuropathy issues. It’s demyelinating so nerves are easily damaged. It’s genetic. My son has already had to have nerve transposition surgeries on both arms because of severe arm pain and loss of use in the last two fingers on both hands. We both have a lot of ongoing issues with it, but research dollars will be minimal since it’s rare and not life threatening unless I get aspiration pneumonia. My son and I have both battled issues with it since our teens. It’s slowly progressive without enough data to make predictions. There are definitely worse neuro diseases to have though so I always feel lucky in the grand scheme of things.

Prayers for you that you will see better days with all this. Neurological stuff seems to wax and wane a lot.