Topic of the discussion
Posted on 8/12/20 4:58 PM
How are you doing? I thought I would open this discussion so we can get to know one another better!
So, what is your dystonia story? When and how were you diagnosed? What type of dystonia do you have? Is your dystonia caused by another condition? What type of treatments have you tried? How are you doing today?
@Sunbeam @madalena @Jaytwothree @Buggsme @betsyns @Zozime @Zozime69 @Phoenix @DAZielinski @dystonialisa22 @rex2748 @Scuba158 @sweb55 @Juliagriffin @Chelebelle321 @pumpkin47 @Goncalo @JudiBeyond @kimlee @neener99
Feel free to introduce yourself to the group and share your story with us here!
Beginning of the discussion - 8/13/20What is your dystonia diagnosis story? Let's share! https://www.carenity.us/forum/dystonia/living-with-focal-dystonia/what-is-your-dystonia-diagnosis-story-lets-share-2345
Posted on 8/13/20 4:49 PM
@Courtney_J Hi, I haven't been on here in a while, so I'm rediscovering it a bit! I was diagnosed around 6+ years ago, but I knew it was coming because it runs in my family. I have cervical dystonia, so my head spasms towards my right shoulder. I've been doing botox injections for it for a long time now, but over time I feel like they don't work as well anymore. My doctor is resistant to let me try surgery of deep brain stimulation, but I'm getting to the point where I want to do it anyway and am thinking about finding another doctor. If anyone knows of any alternative treatments or things that have worked please let me know!