Jessica Ward part 1 Myoclonic Dystonia

Jessica suffers from a neurological disorder called Myoclonic Dystonia. It causes weakness, pain, twitching, shaking, muscle cramps and spasms, inability to do simple tasks, and seizure like episodes that involve every muscle in the body, and more. When her legs or arms cramp she looks like a stiff board and is unable to move them or bend them at all. This can last a minute to several minutes. She suffered on last week that lasted longer than an hour and she ended up in the emergency room where they medicated her with IV muscle relaxers to get it to stop. That was the worse episode so far and we hope the last of it's kind. We hope to be an inspiration to others looking for a diagnosis or who suffers from this disorder.

Category:

Education

Tags:

• Myoclonic
• Dystonia
• Neurologic
• disorder
• muscle
• cramps
• spasms
• seizure
• like
• episodes
• leg
• pain
• tremors
• deep
• brain
• stimulation
• surgery
• weakness
• twitching
• difficulty
• in
• walking

[reggieboy04]

Thank you for sharing. Were you born with dystonia, or is it something that can develop later in life? My son has mild hemiparesis (CP affecting one side of his body) due to a stroke that he survived as a baby. He doesn't shake, but sometimes he has clonic spasms in his involved foot that last for 10 seconds or so after doing a lot of physical activity. He doesn't really complain about them but I've always wondered what it felt like. Thanks again!

[dasey22001]

No, I was not born with this disorder. At age 12, I started having tremors with activity in my right hand. It progressed over the years and by age 22 I was finally diagnosed. The spasms are severe at times and I do have the clonic tonic spasms from head to toe. After the deep brain stimulation surgery, the spasms lessened in severity and I could do many things I could not do prior to the operation. It was a life saver for me. I hope to be an inspiration to others. Keep smiling!

[blobvision]

That's horrible. That must be so uncomfortable. I get that too, but only for a few minutes to an hour a day. It far more mild than that, but when it happens it isn't fun. I have no diagnosis yet, but I know a lot of disease can cause myoclonus. It doesn't really disrupt my life. I couldn't imagine what it'd be like to have that 24/7. I'm so sorry. i h\ope you have gotten better since this video and get good care.

[kaazoom]

Thank you for making this video and helping to raise awareness of movement disorders.

[Dottilicious]

Hi Jessica, I'm Suzy and I'm 26 years old. If you read this, I just want to let you know that I know what you're going through. I also have Myoclonic Dystonia.

Do high pitched sounds or sudden light flashes, etc, trigger attacks for you as well? (The mic sound at the end of your video....ouch haha.)

Take care and don't give up :)