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TOPIC: ATOS

ATOS 3 years 9 months ago #3006

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I am having a meltdown here I have just come in from work to a letter inviting me to an ATOS appointment and dont know what to expect but one thing I do know is when I am put into a stressful situation my dystonia kicks off so bed I need an ambulance and I could just die with the embarrassment of it and by that I mean how I look all twisted with howling noises from my throat like something from a freak show.....I cant do this put myself on public display like something people would pay to see....my intercostal muscles close up with spasms and my throat closes and I literally cant breathe.....what am I going to do???? do these people carry procyclidine and cannulas???.....I have been unconscious with this twice....any tips/help? I am desperate.

Christine
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ATOS 3 years 9 months ago #3017

  • JuliansMum
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Surely you have to explain that to them! They kept calling my nephew for interview until they finally accepted that he has agoraphobia and then they did it over the 'phone.
Good luck!
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ATOS 3 years 9 months ago #3024

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Wee update on ATOS.....I had the interview yesterday and took a friend with me who had to do a lot of the speaking for me because of breathing problems and forgetting my words....Lady was really nice to me asked me to speak as little as possible due to speech and breathless problems so with some gestures and a friend to speak for me I got through it somehow but that is were it all went pear shaped, I was so exhausted and twisted with spasms that I left the office in an ambulance straight to hospital for assistance with my breathing.....the staff could not have shown more support and the ambulance came very quickly, The crew asked me how long had I been in this state and I had to say nearly 2 hours....to say they were not impressed was an understatement...I was taken to the local and nearest hospital....triaged and left on a trolley queue in the hallway my breathing made such a racket medical staff put their head out the door to look and it was not until I send my friend to get me some help that I was moved into a cubicle there I was left for I dont know how long....I cried buckets over the pain in my hip and spine as my body continued to twist....I then was asked by a nurse how I was feeling told her how much pain I was in and she replied by telling me how sore her feet were and how glad she was to get home and get her shoes off. There was 3 attempts to get me to sit up straight to help my breathing but my body was now rigid with spasm and parts of my body have been in spasm for so long I can not feel them so raised voices....you need to sit up to help your breathing...reply I cant bend I have dystonia and I have no control of my muscles...not impressed the staff walked away from me which left me hanging over the trolley. eventually I was seen by a doctor and the IV procyclidine was given.....this was some 7 hours or more after I had become unwell. When they tried to move me to sit up they were rough and it was very painful so I have had to stay in bed today with pain killers.

I have been quite stressed about the appointment plus I have chest infection and asthma as well as acute generalised dystonia so I have had a few visits to hospital and on thursday I went to the hospital near my work and was told they deal with dystonia on a very regular basis....I ask what is the treatment....reply an antidote to what ever drug has been taken ....now we have a problem because I dont take drugs so what was to be my care plan?.....I was to be left with no assistance what so ever as it was felt that if I could calm down the dystonia would go away...at this I lost the plot and did something I never thought I would ever do....are you for real? are you even a doctor or just the head nurse around here? I have been told so many times that I leave it too long to come into hospital and am putting my life at risk with the breathing problem and you are telling me I need a cuppa and a chat to calm me down and I will no longer have dystonia and you are serious about this just to clarify this is your plan for me...yes....well could you please bring me the discharge papers I need to sign to get out of here because I need to find a hospital who will treat me for respiratory distress which is a complication of laryngeal dystonia before I die of neglect I have clearly come to the wrong place and I dont have much time before this becomes serious enough to render me unconscious....head man walks away leaving me with another doctor and a nurse who both figuratively pounced on me emotionally and the doctor asked for 5 mins to contact my GP whilst the nurse puts some stress management tutoring into place which did work along with loads of encouragement and praise for my efforts until the second doctor came back with some very assertive body language as he informed the nurse that I was going to get the treatment I needed...5 mins later I was done and left. The doctor explained that it is usually drug addicts that get treated for dystonia and I was the first person to come to the department with what he called pure dystonia...he apologized and stated that now I am in the system should I need to come back in as an emergency then it should be much easier on me....my reply...I would need to be unconscious and handcuffed before I would ever trust my life to this hospital again....apologies and hugs from the nurse and I left.

So 2 days in a row of this kind of treatment from medical staff....I bought a bottle of wine and finished it....I dont drink as a rule due to the level of medication I am on...it did not make me feel any better so a phone call to the Samaritans were they spoke to me for 2 hours and offered another call back today to make sure that I am alright....safe to say I am in the zone of feeling sorry for myself big time and have made sure that I got plenty of rest today to recover from the physical pain of being pulled about whilst in spasm as well as recovering from the spasms as well.

I dont think I could put myself through this again it was far too much.

Christine
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ATOS 3 years 9 months ago #3025

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Day 3 feeling a bit better and going back to work tomorrow where I hope tp start feeling human again....I am struggling to see how long a person can live like this 5 months of recurrent chest infections which have upset well maintained asthma and knocked dystonia off the wall to the point were my lungs feel like they have shrunk I am exhausted and scared of how few doctors are able to treat dystonia and because of the threat to my breathing I am now living in a state of fear which is not helpful to having any kind of life with dystonia its all gone wrong and I cant figure out how I let it happen....

I need a hug............

Christine xxx
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ATOS 3 years 9 months ago #3026

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Christine,
That's truly awful.
Consider yourself hugged. Xxx
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ATOS 3 years 9 months ago #3028

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Thank you I am still recovering from the trauma of it all but I will get there I just hope I never have to go to that hospital again.

Lots of love to all XXX
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