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Do you use Botox injections for your dystonia?
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Lee__R
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Lee__R
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Last activity on 04/03/2020 at 5:04 PM
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1,338 comments posted | 20 in the Dystonia Forum
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Hello members, does anyone have any experience/opinions/advice with Botox injections for focal dystonia?
@Janine @dyston
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tzap467
tzap467
Last activity on 03/28/2019 at 2:46 AM
Joined in 2019
I've had the Botox injections in the hand and it does work, however, it will ruin your tennis game as it results in no strength in my arm. Will not do again unless I stop playing tennis forever. I have focal dystonia in right hand.
Dyston!a
Dyston!a
Last activity on 08/13/2020 at 3:28 PM
Joined in 2019
33 comments posted | 29 in the Dystonia Forum
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@tzap467 how long have you been receiving botox injections? Do you feel after prolong use that the effects you had initially begin to not last as long?
How is playing tennis in your right hand? or you right handed?
Lee__R
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Lee__R
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Last activity on 04/03/2020 at 5:04 PM
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1,338 comments posted | 20 in the Dystonia Forum
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Hello members,
I wanted to bring your attention to this discussion. Feel free to join in the discussion, comment, and share your experience and opinions... and start making connections with others diagnosed with focal dystonia.
@sneakysideeye @pupagioia @creechr @BeckyS @Mama_bear77 @libbistovall @diego12 @veronicarosenq @Powens @JudyMcVay @Judy747 @Chi910 @Suzannemm @Katie1223 @Mtog04 @mamawho @adrien_US @Greenbay @macias @Janine @Josephineo
Slj42
Slj42
Last activity on 04/17/2020 at 8:29 PM
Joined in 2019
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Sue J
Unregistered member
Go to FB and join the discussion group on cervical dystonia support forum. Many thousands of patients who can share their experience and knowledge regarding treatment and self care.
tzap467
tzap467
Last activity on 03/28/2019 at 2:46 AM
Joined in 2019
@Dyston!a
The injections are every six months. I am right handed. It weakens the hand muscles so that the movement of the focal dystonia is lessened by blocking the nerve signals. Along with it I had a carpel tunnel release so not sure if grip strength not being 100% is due to that or the after-effects of the botox injections which were done approximately one year ago. Not planning on taking botox injections from here on.
The medications that was prescribed was Ropinrole (2g). I stopped taking that one year ago as it made me to drowsy and unbalanced. I've been taking L-Dopa herbal twice a day along with Hemp oil and it does as good or actually better than the prescription drug (sorry big Pharma).
Dearluly
Dearluly
Last activity on 03/25/2019 at 2:20 PM
Joined in 2019
I have cervical dystonia in my neck and I had the injections. I'm sorry to say that in my case I don't see much of a difference. But i can only speak for myself.
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Lourdes
Slj42
Slj42
Last activity on 04/17/2020 at 8:29 PM
Joined in 2019
I'm on the fb group for dystonia I'm finding it very helpful. It's good to be able to share experiences with people who have the same condition as you. Km thinking about acupuncture.
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Sue J
jessicamoosekian
jessicamoosekian
Last activity on 01/10/2024 at 10:26 PM
Joined in 2019
I have tried Botox injections several times with different doctors for my myoclonic dystonia which is in my trunk and intercostal areas. While it did lessen some of the spasms it has had zero effect on my pain level and I believe has made my pain worse
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Lee__R
Community managerGood advisor
Lee__R
Community manager
Last activity on 04/03/2020 at 5:04 PM
Joined in 2018
1,338 comments posted | 20 in the Dystonia Forum
2 of their responses were helpful to members
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Hello members,
Botulinum toxin injections are one of the major treatments for focal dystonia.
Are you aware of this treatment? Have you had, or are your currently having, this treatment? If so, how often?
Do you find these injections effective and beneficial? Painful?
Let's all discuss this treatment method together, share experiences/opinions, ask questions, and give advice!