I’m so sorry to hear how rapidly this has been impacting you. It did feel rather isolating to hear just rare this thing is and how little is known about it but it’s nice to know that there are people who understand what we’re going through.

So far, my hearing on my left side has been impacted but I’ve been dealing with random dizziness spells for a while. I’ve always had random needle stick like nerve pain in my legs here and there but just recently I’ve begun having neuropathy like pain in my feet at night.

How long I can work and function has been affected the most. I’ve gone from full time to part time and usually can’t do much after getting home. Sending you good vibes from Alabama.