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Patients Focal dystonia

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Topic of the discussion

Member Carenity • Community manager
Posted on

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!

Beginning of the discussion - 3/8/19

Do you use Botox injections? Do you inject botulinum toxin?
Member Carenity • Community manager
Posted on
Do you use Botox injections? Do you inject botulinum toxin?
Member Carenity
Posted on

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.

Do you use Botox injections? Do you inject botulinum toxin?
Member Carenity
Posted on

@Hidden username‍ 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?

Do you use Botox injections? Do you inject botulinum toxin?
Member Carenity • Community manager
Posted on

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.

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Do you use Botox injections? Do you inject botulinum toxin?
Member Carenity
Posted on
I'm currently on clonazepam but on the waiting list for botox injections. I have recently been diagnosed with isolated primary cervical dystonia.
Do you use Botox injections? Do you inject botulinum toxin?
1

Member Carenity
Posted on

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.

Do you use Botox injections? Do you inject botulinum toxin?
Member Carenity
Posted on

@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).  

Do you use Botox injections? Do you inject botulinum toxin?
Member Carenity
Posted on

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.

Do you use Botox injections? Do you inject botulinum toxin?
Member Carenity
Posted on

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.