Misty Tompkins Stiff Person Journey

First post: Nov 2, 2021
In 2015 while taking classes at WTA&M I started having eye problems and speech. I was diagnosed with Dystonia a movement disorder. But that was not the end in 2019 during EMT class I slowly became sick could not walk lost voice legs became stiff feeling I could not stand or sit up on own. I had just taken several Vaccines including flu so this worried me. Amarillo VA kept telling me it was all in my head I spent 2 weeks Christmas and New Years alone in hospital. I was not getting better. On Christmas day my doctor did a lumbar puncture and sent off spinal fluids. I went home before teat results came back. A week later my neurologist called and said he did have an answer I had elevated  GAD 65 levels associated with Stiff Person  Syndrome a rare 1 and a million disease. ( not as rare as they say) but still rare. So I had an answer I was sick I wasn’t  not crazy and need of mental health like they said. But for the next year half plus have found myself battling to receive effective care. In the area I live my disease is not known about or treated . When the neurologist here come up against something they do not understand or care to study they basically quit treating.   In a couple weeks I will make my way to AZ where there are more people who have SPS and movement disorders being studied and treated. I will write more of the past journey and new journey as it goes.