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TOPIC: Botox injections not working

Botox injections not working 1 year 10 months ago #3867

  • november21
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I have recently been diagnosed with CD and just had my second lot of Botox injections it is now 5 days since my injection and I'm feeling no difference . I'm feeling pretty fed up since I thought the injections were my last hope. I had been taking diazepam but my gp has refused to prescribe me any more due to the addictiveness of the drug. So I'm not sure where to go from here any advise would be welcomed. I'm tired of living with this disorder !!
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Botox injections not working 1 year 10 months ago #3870

  • Bernie.McMahon
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Hi november21, if you are in the UK you may find it helpful to discuss this with our Helpline Team. They are available Mon - Fri on 020 7793 3650.
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Botox injections not working 1 year 9 months ago #3888

  • stargazer
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I was diagnosed nearly 4 years ago with CD. 5 days after your second round of treatment is still early days (getting used to the timescale involved is one of the things that make this condition so frustrating) Botox is not the last resort by the way, other treatments are available and are explained on the website. In my case it took quite a while to get the best dosage in the correct muscles to get any significant relief. It also takes over a week or two for the botox to start working. I get between 250 and 300 units of botox every three months or so, and also take 4mg ofTrihexyphenidyl 3 times a day. My condition is noderately well controlled and I have good days and bad days, but I am still much better than when I was first diagnosed and awaiting treatment. I wish you well with your treatment'
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Botox injections not working 1 year 9 months ago #3895

  • Janeycat
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Hi Stargazer, can you give more details about yoir experience "it took quite a few goes to get your botox right" I am in the West Midlands whereabouts are you? Are you going to any of the dystonia meetings?
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Botox injections not working 1 year 9 months ago #3896

  • stargazer
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Sure. My first round of treatment was Botox but at quite a low dose. About 50 to 100 units I think. I had a minimal response. 3 or 4 months later I had a bigger dose. Slightly better result. My local was extremely busy so the appointments were spaced out more than they should have been. I tried another clinic suggested to me by a member of our local group. This turned out to be a bit of a waste of time to be honest. I had been given a low dose of Dysport 300 units approximately but it much weaker (about one third or one fifth of the strength of Botox. I also went to see a private neurologist in London. She was quite helpful and positive. Because my dystonia is complex and jerky it took a while (about 18 months I think) to get the optimum dose to the most affected muscles. It generally takes over a week to see any effect and it builds gradually in a few weeks. But everybody's experience will be slightly different. I live in Essex and went to a Living with Dystonia event about a year ago but not to any other meetings.
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Botox injections not working 1 year 9 months ago #3897

  • Janeycat
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Thanks for taking the time to share your experience. Make me realise I am not alone in finding the best treatment approach. I never knew dysport was different to botox. I have a differwnt type of dystonia normally static but segmental axial.and cervical.
Can I ask if, when your injections were done they explained what they were doing or talked about the muscles involved and generally informed about what and why they were doing. Or was it very quick?

I had some brief experience of botox but no signal showed up on the EMG
It was injected anyway and the muscle treated responded but I stll had some symptoms and pain. My first injections to my back muscles were a total of 500 dysport in 3 places. I realise everyone is different. You are miles from me I am in the Midlands near Birmingham but I come from Kent!.
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