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TOPIC: Botox injections not working

Botox injections not working 1 year 9 months ago #3898

  • stargazer
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If you go to the home page, click on "About dystonia" then "treatments" click on "Botulinum toxin injections" you can get a lot of info, including "Botulinum toxin injections not working"
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Botox injections not working 1 year 9 months ago #3899

  • Janeycat
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Yes I have read that but it is really nicer and very reassuring to know others experience of their interaction and communication with their injector. Some injectors spend 5 nins while others seem to communicate the intention or outcomes or expectations etc. I wish mine communicated a bit better
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Botox injections not working 1 year 9 months ago #3900

  • Tim G
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Hello,
For the toxin to be effective ther has t obe a combination of the right muscld and the right dose, which can take time to sort out. Your injector should discuss strategy with you. In theory you can ask for another specialist if you are not happy with what he / she is doing or lack of communication- in practice not sure how easy this would be I have a dystonia which affects my speech and eating and various muscles in my face have been injected with a high dose to no effect. I am receiving treatment in London, where small doses are being administered every month increasing slowly to minimise side effects which can include swallowing problems, and to speed things up. I have been on this regime since December, and although going down to London from Merseyside every month is a bind not to mention an expense, I will persevere with anything. Up to now no side effects or benefit. We just keep increasing the dose until I experience one or the other. My big worry is this particular muscle will not respond and there are no other muscle groups left which can be injected safely. We all respond differently to treatments, which have to be tailored to the individual. However, we all need to try and stay positive. It would help though if you did have an empathic injector, and one you have confidence in.
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Botox injections not working 1 year 9 months ago #3901

  • Janeycat
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Hi Tim, thanks for telling me about your experience. It is really good you are positive I too hope and keep moving forward and maybe we will be the lucky ones one day. It is as you say important for them to find the muscle during spasm but I suppose if it varies then that it is not always easy. I am hoping my physiotherapist will accompany me next time to help explain things or even with some ideas. My injector has a reputation for being the best in the centre so I am hoping to give it another go and see if more infomation comes to light. I spoke to PALS for advice and they say there is no one else who could do it.
Anyway thanks it was really helpful to learn about your experience. Having it affect your speech and eating must be extremely difficult and I really wish you the best luck in getting the treatment to help you.
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Botox injections not working 1 year 7 months ago #3950

I am recently diagnosed and really low at the moment, but reading some of your experiences has made me realise I am not alone. 8 days in after first jabs and nothing either. Are their any groups near me to share info etc.. I live in Preston.

Thankyou

Stephen.
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Botox injections not working 1 year 7 months ago #3951

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You won't notice anything at 8 days. Im on my 3rd session now and not had much if any progress. Im at week 6 on my last session with emg guided. It can be very subtle. Everyone is different. I have segmental dystonia so it affects both my back and neck so I know they can only give it a go as best they can.

Anyway have some faith as no botox takes full effect at 8 days. The helpline can explain many different possibilities. They are ever ever so nice and kind and give lots of examples to comfort your fears.

Im on a down day too. But thats just today. It is very very normal and Ok. Find something to get into. I love my animals and with no pets at the moment I am looking at treating myself to a great big English Lop bunny!! Seen some beauties online!
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