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Anyone dealing with Dystonia?

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

I have abdominal dystonia. It began 2 years ago after extensive spine surgery. I also have Parkinson's. When I stand up the muscles go into spasms, pulling my upper torso forward causing difficulty breathing. I had a test run of Botox. It didn't help. Two weeks ago I had a full dose. No improvement yet. The doctor guides the needle using ultra sound equipment. It is extremely painful having him press the equipment into my ribs. The shots don't hurt. The needle is very tiny and Botox doesn't hurt as it's being injected. Because of the US pain I'm not planning to have a repeat. I'll just have to learn to live with it.

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Replies to "I have abdominal dystonia. It began 2 years ago after extensive spine surgery. I also have..."
Teresa, Volunteer Mentor | @hopeful33250 | Nov 20, 2020

Hello @sadnancy

I am sorry to hear of the difficulty you are having getting treatment for your abdominal dystonia. This sounds very difficult when I think of the pain, spasms, and difficulty breathing. I can understand that you might want to forgo further Botox injections due to the pain/pressure of the ultrasound equipment.

You also mentioned that you have Parkinson's. I would like to invite you to join the PD discussion group here on Connect. Here is the link, https://connect.mayoclinic.org/group/parkinsons-disease/?pg=6 to that discussion.

On Mayo Clinic's website, there is also information on dystonia. Here is a link to that information, https://connect.mayoclinic.org/group/parkinsons-disease/?pg=6.

While there doesn't appear to be a cure for dystonia, is there any physical therapy that might help you with the dystonia symptoms?

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