im so upset,my neuro keeps puttin presure on me to have a nother brain scan ,cus she say there more things goin on with my brain and they wont to get to bottom of it.she sent me to queen liz last monday to see a movement disorder/neuro.i dragged me self out the door with a carer ,im ill and did not wont to go no were ,but also did not wont to miss my appointment.when i got there in my wheelchair ,he did not have a clue i had spine probs,or arthritus of the hip and back,or other big health issues im fitin rite now,he had not took the time to look up on the computer screen before i went into the consultant room,so i had to go through things i was not happy doin ,he went on then bout my dystonia and we got that sorted out.but then for 20 mins presure me into this blimin brain scan ,my other neuro had asked him to speak with me,in the end i came out of the room agreein to somethin i had said for 20 mins no to,just to shut him up so i could get out the room.i felt so sick in me tum with stress and bursted into tears soon as i got out.since then my head is banginin,cus now they have cancelled my neuro app from march to 22nd of dec ,3 blimin days before xmas,so now i no for a fact this blimin brain scan is goin to be mentioned.it my stupid fault for sayin yes,prooves im weak ,carnt even stand up for me self.i do understand there veiws that they wont me to have another cus things have changed with my brain and movements ,but they wont listern tome,i got other big health probs goin on at mo and i dunna need them in my face puttin the presure on mme,givern me so much more stress for now.my gp has told me today he will rite aleter to both neuros and tell erm to get out me face so to speak,least until i decided im ready for this.now has anyone else had simular probs before,bein pressured into somethin they dunna wont ,and feelin forced to say yes ,when not comphy with it,brain scan ,or anything else to do with pd ,or even other health probs?
I do recognise what you say about them not reading your notes until you are in the room. Every dr I see scribbles pages, it all gets entered on the computer and sent to the GP, but one year after diagnosis I saw one of the partners at GP practice and asked her a question about parkies, her jaw hit the floor and she stared at me saying 'you've got parkinsons?'
I try to hang on to the belief that when they are offering tests etc they have got my best interests at heart. Nevertheless I do like to see some sign that they are listening to me and I think this is what is giving you most grief. Have you got a PD nurse you can talk to?
Is it a repeat test they want to do, or is it something they have not done before? I hope you can find some way to give yourself a little treat to cheer you up. Reading that it looks so b****y patronising, seeyou later in the cafe I am making something chocolate.
I try to hang on to the belief that when they are offering tests etc they have got my best interests at heart. Nevertheless I do like to see some sign that they are listening to me and I think this is what is giving you most grief. Have you got a PD nurse you can talk to?
Is it a repeat test they want to do, or is it something they have not done before? I hope you can find some way to give yourself a little treat to cheer you up. Reading that it looks so b****y patronising, seeyou later in the cafe I am making something chocolate.
hi mosie,yep i no wot u mean when they say HAVE U GOT PD
as well,when u see other general practioners ur not use to cus carnt get a app with the normal 3 u may no and have trust inyep i do have a pd nurse,ihad alady when i was dx ,she was brill,but then moved her career to london after bein with me for 7 yeas,then i was with out a nurse till beginin of last year when aman took over,he was still bein trained when let out into the open world so to speak.but with in this year ive only seen him once in the consultant room,and not herd or seen him since,he gave me a number to call ,when ihave no reply comes back,not been in consultant room since,and ive never thought of askin were he was,mind on other maters.ive had this test done back in 2008,but they seem to think ive got worse quicker than i should be,and say i need another to see wots goin on with my brain.but like ive said ,ive got other big issues at mo and dont need added pressure pushed in me face ,not rite now.i will join u in the cafe later mosie ,im dibetic ,but blimy do i need a scoff of some chocky rite now
as well,when u see other general practioners ur not use to cus carnt get a app with the normal 3 u may no and have trust inyep i do have a pd nurse,ihad alady when i was dx ,she was brill,but then moved her career to london after bein with me for 7 yeas,then i was with out a nurse till beginin of last year when aman took over,he was still bein trained when let out into the open world so to speak.but with in this year ive only seen him once in the consultant room,and not herd or seen him since,he gave me a number to call ,when ihave no reply comes back,not been in consultant room since,and ive never thought of askin were he was,mind on other maters.ive had this test done back in 2008,but they seem to think ive got worse quicker than i should be,and say i need another to see wots goin on with my brain.but like ive said ,ive got other big issues at mo and dont need added pressure pushed in me face ,not rite now.i will join u in the cafe later mosie ,im dibetic ,but blimy do i need a scoff of some chocky rite now
Dear Ali,
if half of us were to do our professional jobs (when we were working) with as little preparation as some of these consultants seem to get away with, we would have been sacked. I understand where pressure of work can leave you ragged at the edges, but it is their job to be empathetic, sympathetic, compassionate and professional all at once. I assume it is what they are paid for.
If once back in your home you change your mind about the scan my opinion for what it is worth means that you take a rain check and unless they regard it as an emergency scan, you have the right to postpone it until you feel more able to cope. They seem to be giving you mixed messages and I know that feeling of bursting into tears when leaving a consultant's room. The key word here is postponement not cancellation.
Three days before Christmas seems a bit harsh when the bad weather compounds our ability/inability to leave the house in the first place. Christmas is something to look forward to.
Your tenacity and general happy attitude always makes me smile. For this I am very grateful and anything I can do and which could possibly make your life smiley to I will try and do. As ever keep talking.
if half of us were to do our professional jobs (when we were working) with as little preparation as some of these consultants seem to get away with, we would have been sacked. I understand where pressure of work can leave you ragged at the edges, but it is their job to be empathetic, sympathetic, compassionate and professional all at once. I assume it is what they are paid for.
If once back in your home you change your mind about the scan my opinion for what it is worth means that you take a rain check and unless they regard it as an emergency scan, you have the right to postpone it until you feel more able to cope. They seem to be giving you mixed messages and I know that feeling of bursting into tears when leaving a consultant's room. The key word here is postponement not cancellation.
Three days before Christmas seems a bit harsh when the bad weather compounds our ability/inability to leave the house in the first place. Christmas is something to look forward to.
Your tenacity and general happy attitude always makes me smile. For this I am very grateful and anything I can do and which could possibly make your life smiley to I will try and do. As ever keep talking.