About 10 months ago, I began re-living the nightmare I had back in 2008. My hands and feet began curling in and over these 10 months my symptoms have just continued to get worse and worse. I have been going o Brigham and Women's Hospital to have my DBS settings changed, I received botox and tried different medications. Nothing was working and the frustration was taking over my life. I spent hours and hours day after day searching for doctors, and treatments and answers. Two weeks ago I met with the neurosurgeon and my neurologist, who told me basically there was nothing else they could do. They said they could do more botox, change my settings or make a lesion in my thalamus. I wasn't pleased with this appointment but tried to stay positive because he told me he would call me within a day or two with a date for botox. I never heard from him. I pushed and pushed for a second opinion. I am done waiting around and having this pain ever...
My life-long battle with Dystonia