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Living with Parkinson's Disease - Meet others & come say hi
Parkinson's Disease | Last Active: 2 days ago | Replies (732)Comment receiving replies
Hi, I’m Tina. I was diagnosed four years ago with Parkinson’s at 54 yrs old— only started with a left-hand tremor. About a year ago I started having Estonia and my left foot. In the past six months, it has progressed now to having dystonia lasting way longer than 15 minutes usually a hour to two hours very painful and involves my entire left leg and both hands and my jaw. It was surprising that it’s so painful and it nothing you can do about it but just try to get through it. I am taking carbidopa levodopa 5 times a day and then the extended release at bedtime.
Since this Dystonia has started, I was started on the neupro patch. I took it for three days and had a lot of terrible side effects so I had to stop it. I am wondering what any of you are taking for the dystonia that’s so very painful.
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@hello56
Hello Tina,
I am sorry to hear of the difficulties you are having with dystonia. You have mentioned several medications as well as the neuro patch. I'm wondering what other therapies might have been tried, such as physical therapy, etc. As you would like to meet others with dystonia, here is a link to other discussions where members have mentioned dystonia, https://connect.mayoclinic.org/search/?search=dystonia. Feel free to read their posts and reply with any questions you have.
Here is a link to some information from Mayo Clinic's website regarding dystonia and suggested treatments: https://www.mayoclinic.org/diseases-conditions/dystonia/symptoms-causes/syc-20350480. I see that deep brain stimulation is a treatment that is suggested. Has this been recommended for you?
Please know that it is always appropriate to seek a second opinion. Have you considered getting a second opinion? It would be best to obtain this second opinion from a Parkinson's Center of Excellence. Mayo Clinic is one of these centers. If you would be interested in an appointment, here is a link with information on obtaining a Mayo appointment, http://mayocl.in/1mtmR63. If for any reason, an appointment at Mayo is not possible, here is information about other Centers of Excellence in the United States, https://www.parkinson.org/about-us/news/parkinsons-foundation-designates-three-new-centers-of-excellence.
I look forward to hearing from you again.