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Hi Wayne
Welcome to DNA. I’ve have CD for about 18 months. I’ve found it really helps to be able to connect with other people who have dystonia. You’re right that it’s a bit scary not knowing how or if it’s going to progress. I don’t think mine has spread but I get the awful fatigue that you speak of. I’ve had Botox twice and will have more soon. I’m trying to manage mine with exercise and stretches given to me by a physio who specialises in neuro conditions. It seems to be helping with pain. I just take each day as it comes.
Denise 🙂
