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Hi Mandy
You can read my story above. I have multi- focal Dystonia. I take LOTS of drugs, but am due to see my neuro shortly and am going to have a chat about cutting back the number of different drugs I take.
Though I’ve been taking Madopar (levodopa/dopamine) for a while, I’ve only taken a tiny amount and am currently trialling a much larger dose. Fingers crossed!, but I think it may be working; working in a way that almost nothing else has.
As well, I have Botox for a twisted left foot, and it works – sort of!
I am currently trying to find a neuro Physio. A year or so ago, I saw a mainstream physio and ended up in a lot more pain.
How amazing that you read that article about Dystonia. As a group, doctors seem to know amazingly little about Dystonia. If ever I mention it, they generally say – but that’s a symptom, not a condition.
I hope you get many replies with lots of suggestions.
Louise
