Dystonia Support Group

Dystonia (literally, "abnormal muscle tone") is a generic term used to describe a neurological movement disorder involving involuntary, sustained muscle contractions. Dystonia may affect muscles throughout the body, in certain parts of the body, or may be confined to particular muscles or muscle groups.

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Brain & Nervous System
/ Dystonia Support Group

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scuba07
scuba07
Hi there everyone. I'm new to this site. I have had cervical dystonia for about eight years now. It has slowly been getting worse over the years and it has finally made have to leave school. I was hoping to chat with some people who knows where I'm coming from. I'm also now living the farthest I've ever been from family so things are starting to get tough.
bgoodwin44
bgoodwin44
Hi There,

I Also Have Cervical Dystonia, Since 1990 Went Through The Botox Injections Got Little Or No Relief, I Was Going To UCLA For All My Treatments, Was Finally Referred To A Neuro-Surgeon, I Chose Then To Go Through The Experimental Surgeries, I Shouldn't Say, ' Kill Or Cure ' But The Pain Was So Terrible, I Put My Life In The Hands Of God And My Surgeons, I Have Since Gone Through 9 Operations, The Pain Before Was Probably A 10 !! Now The Pain Is Generally A 4 Or 5 !!

Yes, I Still Have Bad Days, But I Can Hold My Head Staright, And Live Somewhat Of A Normal Life, Before There Was Never Any NORMAL.

Please Feel Free To Ask Me Anything - Please ?

Love Ya, Barbara
scuba07
scuba07
If you don't mind me asking what kind of surgeries have you had? Things are starting to get really bad for me. I'm not sure how much longer I can handle the pain. I'm hopeful that the Botox will help, nothing has helped yet. I'm willing to try anything at this point. I had to give up diving which killed me, so I would at least like to be as normal as possible. I'm really glad to hear that your pain isn't as bad as it was, that really gives me hope.

I was also wondering...I see you have children? Do you know if Dystonia is hereditary? I am so afraid that if I one day decide to have children that it may be passed down to them.

Thank you so much for getting back to me and letting me ask a few questions.

Look forward to hearing from you,
Joanna
deleted_user
deleted_user
Joanna,

I haven't had surgery, but I'd like to comment on the heriditary issue that you raised on your post. Both of my children have Tourette's Syndrome, as my mother's brother and several of his children. My doctor strongly believes that a predisposition to movement disorders may be genetic, but at this point I don't think anyone really understands it. I don't know you well, but I truly hope and pray that you will live as full a life as you are able, eventually falling in love, getting married, and having children. My grandparents must have been carriers of any genetic disorder, but of their more than 100 offspring (mother, aunts, uncles and all their children) only 3 of us ended up with a movement disorder. I'd take those odds any day, if I were you. Concentrate on getting better, and then go out and live your life! Blessings to you!
deleted_user
deleted_user
I just realized I wrote that 3 people in the family were affected. Actually it's 6 out of 100. I'd still take the odds!
scuba07
scuba07
I wanted to thank you for your reply. I haven't been on here in awhile so I just got your message. Thank you for the info you gave me. I'm the only one in my family that has a movement disorder, so I've just been wondering if I can pass it on. I'm sure I could, but that's the last thing on my mind. Right now I'm just trying to find a neurologist that will see me so that I can get this all worked out. I want to be able to live alone and keep a job. My attacks are getting more frequent so finding a job is getting hard.
Thank you for the information you've given me. It was very helpful
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