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I have cervical dystonia and suffer from the stare of others
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Cervicaldystonia
Good advisor
Cervicaldystonia
Joined in 2019
@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.
whoami
Good advisor
whoami
Joined in 2016
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
Good advisor
Cervicaldystonia
Joined in 2019
@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
Good advisor
whoami
Joined in 2016
@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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Whoami
Mazza1959
Mazza1959
Joined in 2019
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
Good advisor
whoami
Joined in 2016
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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Whoami
Mazza1959
Mazza1959
Joined in 2019
Thanks for the info Whoami, is that QE Hospital in Nottingham or Birmingham can I ask?
whoami
Good advisor
whoami
Joined in 2016
@Mazza1959 its the QE in Birmingham
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Whoami
Cervicaldystonia
Good advisor
Cervicaldystonia
Joined in 2019
@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 managerGood advisor
JosephineO
Community manager
Joined in 2018
@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:
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Josephine, Community Manager
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Cervicaldystonia
Good advisor
Cervicaldystonia
Joined in 2019
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...