Tag Archives: Parkinson’s

Dystonia and Parkinson’s

Hi my name is Diane I was diagnosed with Parkinson’s in 2012 iv just about had it with doctors that look right through me and don’t listen when you are trying to explain your problems I started getting dystonia in beginning December 2012 about 6 months after being diagnosed with Parkinson’s I spoke to my neurologist who also doesn’t pay much attention just said you wouldn’t jet better well I know that my arm kept twisting around till it felt like it was coming out of the socket this carried on and my toes roll under and my hand would twist and freeze in June 2014 I had a very server dystonia in my arm that continued for 2 hours I feel so strange well my young son phoned for an ambulance when they arrive they had know idea what to do with me as I seem to have pain ever were they decided to take me to AE I stood up to walk to the door when I had this unbearable pain go through my body that my legs went from under me when arriving to hospital the pain was so bad I just wanted to die I know that sounds terrible but even a nurse who had worked in AE for some years said she had never seen someone in so much pain they only part of my body on the bed was the top of my head and the tips of my toes my back was so arch up they did know how to stop the pain as they had given me everything they could I didn’t work so kings college was informed who told them to give me high dose of diesapan which with all the other drugs I’d had knock me out but since being discharged from hospital I’m still in pain every day since kings changed my parkinson’s meds which has helped but had bad attack of dystonia again to day and save me being stuck in hospital got my Gp to give me higher dose of morphine and up the diesapan which has helped but still got pain does anyone know how I get a proper diagnosis for dystonia sorry for going on but i had know one to talk to, thank you. Diane k