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Anyone dealing with Dystonia?

Brain & Nervous System | Last Active: Feb 14, 2023 | Replies (44)

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@matttheschmatt

We have tried about 8 medications with none helping and only Clonezepam helping a little with anxiety and some muscle tension. We recently attended a forum led by the Dystonia Research Foundation at Northwestern Hospital in Chicago. Dr. Cynthia Comella of Rush Medical Center showed a presentation which listed many drugs and their efficacy for dystonia patients. Sadly most didn't work well. Please contact the foundation to get a copy. It is eye opening.

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Replies to "We have tried about 8 medications with none helping and only Clonezepam helping a little with..."

Clonezepam is the only medication that helps me. Neurologists always want to give you ARTANE, but that makes me shaky and worse. I have an okay neurologist but she refuses to give me the proper amount of Clonezapam for severe pulling and pain. She is about to be fired and I'm looking for a compassionate caring neurologist. Every time I go this neurologist she learns a thing or two from me. I know more about Spasmodic Torticollis than she through my support groups and Symposiums I've attended plus living with this monster forever! I've informed her that Dystonia is a sensory disease. Yes, white light and white paper would send me through the roof and when I see a green metallic colored car, I feel like I'm experiencing a seizure. My disease originates in the Basil Ganglia and I'm overloaded with over the top neurotransmitters, (ACEYTOCOLENE) hence the hypertrophied muscles in my neck that look like ropes. I hate this disease. This disease is mostly GENETIC and only one family member has to transfer the DYT1 gene to their offspring.