Hi everyone, I'm new here. I've been dealing with a rare movement disorder for a few years now — involuntary neck movements and mouth tics. Even after seeing multiple neurologists, including specialists at AIIMS Delhi, it's still not been confirmed. It's been a long road of doctor-hopping, medications (currently on a few), and not a lot of clear answers.
I'd really like to hear from others here — what's been the hardest part of your own journey? Getting a diagnosis, finding the right specialist, managing symptoms day-to-day, dealing with how others react, or something else entirely? Just trying to learn from people who actually understand this.
Thank you for reading, and I hope things are as manageable as they can be for all of you.