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Hi Everyone. Sorry it has taken so long for me to introduce myself. My full name is Roslyn but most friends call me Ros. Unlike most people my Neurologist knew long before me that there was something wrong. I have Meige syndrome (cranio/facial Dystonia and Blephrospasm) I also have cervical, foot and hand Dystonia. Unknown to me it has been coming on for some months. It wasn’t until lst August last year when I couldn’t open my eyes, pain across my neck and shoulder, that I went to my GP. After checking me for infections she then told me that my Neurologist had told her I had Meige Syndrome. Apparently he had been watching my progress for some years and wanted to wait until I rep0rted some positive symptoms before telling me. I also have Epilepsy – not thought to be related to Dystonia – and have been seeing a Neurologist for 10 years and unknown to me he has a special interest in Movement Disorders. Every 3mths I have Botox around my eyes, jaw and neck and take a small amount of Artane. This is done by a different Neurologist. I am restricted what medication to take because of Epilepsy.
Tai Chi is something I have been considering for sometime Margot but am having trouble finding a suitable place. I have been to one but they were all over 80yrs. My brother and myself are involved in research looking at the genetics of Dystonia at North Sydney Hospital.
Looking forward to hearing from other people with stories to tell.