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Hey I came across your thread and am in the neuro limbo as well. Got sent home with partly paralyzed vocal cords/ larynx and jaw clonus or dystonie and have to wait and see. I cough and drool a lot and get speech therapy which I can definitely advise as bulbar pals get it too. I wonder if you...

Just a mini update especially for other readers with similar symptoms. The neurologists in my city did just a clinical exam, unfortunately no bulbar emg. They suspect a dystonia but told me that my symptoms are diffuse and the big picture behind might be identified in the next months. I also...

Thank you so much for answering all my questions immediately, Nikki. Your advice is really helpful and much appreciated since I felt very insecure and anxious after a long list of doctor visits. I was hoping for NFL as a new biomarker but you are totally right, it seems to be studied here too so...

Dear lovely Community, Unfortunately my old thread is closed. I've been lurking around for a while. My symptoms unfortunately progressed, more cramping, stiffness and clonus of jaw + hyperreflexie. I had mrt, spinal tap and bloodwork, video endoscopy done as well as an emg in December which...