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I have cervical dystonia and suffer from the stare of others

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I have cervical dystonia and suffer from the stare of others

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Cervicaldystonia

05/03/2019 at 10:31

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Cervicaldystonia

Last activity on 13/12/2020 at 12:40

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Hello, I'm the first to talk, I hope I'm in the right place... I have cervical dystonia and the longer it goes on, the more it impacts my daily life. I feel like people are staring at me, that the girls I meet don't look at me very much... Is it in my head or do you have that feeling too?

Thank you very much...

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Cervicaldystonia

Edited on 03/04/2019 at 14:22

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Cervicaldystonia

Last activity on 13/12/2020 at 12:40

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@Mazza1959 @Paulphi‍ @whoami‍ Thank you both, it is great that the botox injections are working for others too, I hope that science continues to avance and our treatment will become better and better!

Yes, I really need to get over how I perceive other people noticing me, like you said, it is their problem, not mine. I think it is hard enough to be a human, we all have things we are shy about it, but dystonia makes it all the more evident and apparent.

I have cervical dystonia and suffer from the stare of others https://www.carenity.co.uk/forum/dystonia/living-with-focal-dystonia/i-have-cervical-dystonia-and-suffer-from-the-s-2752 2019-04-03 14:22:36

whoami

03/04/2019 at 16:03

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whoami

Last activity on 08/08/2019 at 14:21

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I struggle to look left so hate when anyone sits to my left,I try and look at them but it leaves me in so much pain,I have to plan certain things like going to the pictures or theater has I have to sit in a certain place to be able to watch a show properly.Also I cant look up without causing pain.I think we all learn coping mechanisms and has you go on you will find yours.Funny enough I'm just on my way home from having my botox 4 weeks late hes cancelled one of his clinics.Im hoping this was a one off.

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Whoami

Cervicaldystonia

23/04/2019 at 09:46

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Cervicaldystonia

Last activity on 13/12/2020 at 12:40

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@Mazza1959 @whoami That is terrible that your treatment was delayed, did you feel pain early? I think this happened to quite a few people this month for their botox injections /:

whoami

23/04/2019 at 13:12

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whoami

Last activity on 08/08/2019 at 14:21

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@Cervicaldystonia‍ yes I find the longer I am waiting for my injections the more the symptoms start to show themselves and I get a lot of pain in my neck and shoulder,luckily I was off work at the time.

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Mazza1959

23/04/2019 at 13:15

Mazza1959

Last activity on 14/08/2024 at 11:10

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Just to update, I eventually managed to get my botox injections after complaining to PILS (Patient and Information Liaison Services), arranging for my GP to write to Neurology department and contacting my Occupational Health department at work (I work for the NHS). As my original appointment (due 17 April 2019) was postponed to 10 June 2019, I explained that it would mean I would end up having to take time off sick from my work etc.

As I understand that there is currently a shortage of Neurology consultants due to sickness, not recruiting etc I am anticipating problems at my next OPA date (which incidentally has not yet been set). I was wondering whether I should just wait and see if my appointment is given at the correct time, or perhaps contact NHS England and ask if it would be possible to get an appointment at another OPA neurology clinic somewhere in the UK where appointments are not so few and far between. Please can anyone offer some suggestions as it causes so much stress not knowing. Many thanks x

whoami

24/04/2019 at 16:01

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whoami

Last activity on 08/08/2019 at 14:21

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Whenever I go for mine they ask me how often I come and then I get a appointment within a couple of days.I used to go every four weeks now I go every 12.I go to the Queen Elizabeth Hospital and I only ever see the one professor so if hes off or something is wrong the appointment gets changed but I must admit they has only happened a few times.

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Mazza1959

25/04/2019 at 10:08

Mazza1959

Last activity on 14/08/2024 at 11:10

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Thanks for the info Whoami, is that QE Hospital in Nottingham or Birmingham can I ask?

whoami

26/04/2019 at 11:23

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whoami

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@Mazza1959‍ its the QE in Birmingham

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Whoami

Cervicaldystonia

29/04/2019 at 14:19

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Cervicaldystonia

Last activity on 13/12/2020 at 12:40

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@Mazza1959 I'm glad for you that you got sorted in the end. It is already so difficult dealing with this condition, nevermind when spanners are thrown into the works :/

JosephineO

Community manager

12/07/2019 at 11:12

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JosephineO

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Last activity on 15/07/2024 at 09:21

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@Cervicaldystonia @whoami @Mazza1959 @whoami @Mazza1959

Hello, I hope you're all doing well :) don't forget to take part in our survey about cervical dystonia and botox injections. We want to find out your opinion to help improve the treatment of cervical dystonia :)

Find the survey here:

https://member.carenity.co.uk/option/surveys/understanding-the-waning-of-botulinum-toxin-type-a-effects-and-its-impact-on-the-quality-of-life-of-adults-patients-living-with-cervical-dystonia/24

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Josephine, Community Manager

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