P
pink_angel
New member
life was all very "normal" until feb 2005,my life changed beyond all recognition literally within hours after a night out with "friends"
my drink was spiked which put me into a 25 minute seizure and ended up spending 2 weeks in hospital, after regaining contiousness 6 hours after i was in hospital..my left side was paralysed, i was moved from my local hospital after a week after my seizures were happening every hour moved to a neurological hospital where i spent a further week having to learn to talk, eat and walk again
was given no answers as to what has happening
i was told "i was faking it" and was refused all tests and treatment and was discharged only just about walking on crutches and seizures still very much happening..by the end of that year (2005) my drs told me i had to go into a wheelchair
an NHS investigation was taken out by my local MP..who managed to get me re-admitted for an MRI scan...but the results were never given as the scan went "missing"
in july 2005 my seizures started turning nasty from 4-6 a day to having potentially fatal epistatus (continuing seizures needed emergency treatment) 3 seizures nearly killed me - where my airways collapsed and paramedics had to put a nasal air tube in...it was still diagnosed as CD and non epileptic seizures, despite me being in intensive care!
in sept 05 i was on holiday in devon and cornwall, when i went into status, i was blue lighted to hospital- north devon district, seizure was stopped as usual with rectal diazepam and was kept in, the consultant there saw me for what the problem was...and asked if theycould increase my doseage of anti convulsants..whcih my local hospital would NOT do. i stayed 2 days while this was done, and over 4 days my seiuzres came down..to 1 a week, and is now every 2 weeks.
the consultant told us as a family to move hospitals before my local one kills me..so i moved to the national hospital for neurology in London, tests were "inconclusive"..i was told by the neuros they couldnt be 100% sure i dont have epilepsy due to the drug i was spiked with and that they dont have my first MRI to compare with the one they have - which was a year after it, so they dont know if anydamnage was done and now had recovered into scaring- causing seizures
the paralysis...well was diagnosed with left Hemiplegia and hemi-sensory disturbance which means left sided paralysis and no feeling in my left side
i can only walk aided, either with crutches or a special walking frame (kaye walker) on short distances only with the help of splints on my left arm and leg - i also suffer with drop foot characteristic of hemi but most of the time im reliant on my wheelchair
i was admitted onto as multi-dispinary rehab programme for 4 weeks which proved nothing and actually made me a lot worse due to the surroundings i was in but the hospital had this belief that you will go in and come out "cured" ive not once refused any treatment ive gone along with everything and 4 years on...still no further
i was promised CBT in London but they wouldn’t accept me until i had local care back up - which my local area was refusing me a psychological assessment...when it did happen, is too late as i got taken of the referral list.
i was refused 1 to 1 therapy even though neurological drs had recommended CBT..i wasn’t allowed it
so i was put onto "group therapy" holistic support to mental health it was, and it was absolutely horrible, the "mental health nurse" just wasn’t a nurse they didn’t want me from the beginning, i was on a fake CPA, and was not allowed crisis care...again i went along with the drs and did everything i was told to do.
Towards the end of last year i was at breaking point, I tried to OD on codeine I just had enough, a big care meeting was called with neuro care & mental health and social services who wanted me hospitalised for my own sake. Mental health team refused and refused medication even though i wanted it and then CBT was refused again. This time the reason was " i had it once im not allowed it again" (had it when i was 18 for differnt reasons)
backed into a corner me and my family faced the financial wall of going private, which is exactly what happened, had a psych assessment within 3 days of referral my full mental health problems were diagnosed - depression - which I already knew then as a result of the spiking now have PTSD, anxiety and panic attacks, social phobia, and food phobia.
Despite the "neurological" side diagnosing Conversion disorder, my new psychiatrist doesn’t believe it ( he used to work NHS and was on the neuro ward when I got admitted in 2005) i am now undergoing CBT 1 to 1 for however long it takes, i am also on fluoxetine and most recently mirtazapine has been added.
Now bearing in mind ALL my physical probs were being diagnosed as psych. July last year put a whole different light on it, as one Saturday night proved...ive had spasms in my back/spine for nearly 4 years drs said it was psychological and gave me Dihydrocodeine and to get on with it. Well this night my spine locked into spasm to the point even moving a finger was agony
the pain increased further to a point of being unable to move, which was extremely frightening. I was experiencing pins and needles down my right side, and was incontinent due to not being able to move from the considerable pain.
Decided to phone the on call doctor as the pain had become unbearable and was getting very frightened.
The doctor called me back and was utterly useless (see my intro thread for more) I made a desperate phone call to NHS direct, who took my details and within 10 minutes a nurse called me back, who was shocked with the advice I had just been given NHS direct said to dial 999.
The Ambulance came and they agreed to transport me to hospital.
At hospital I was seen by a Doctor and given Pethadine to help with the pain and stayed at A&E for a few hours until I was stable.
The Dr examined my back and could feel pressure on the lower right side. He advised me to see my GP to discuss pain relief and further investigations, in which i was then told i could be facing total paralysis and need to see a spinal specialist
it was then found i have scoliosis - curve of the spine, in which im now having regular physio - private as NHS refused!!!! and am in a spinal brace to prevent the curve worsening...now someone correct me if im wrong. That is NOT psychological???i was unable to walk for 9 weeks and couldn’t lay on my spine so had to sleep sitting up, until my community neuro team OT managed to get me a specialised hospital style profiling bed with pressure matteress as the pressure between a "normal" one was to great on my spine, i also had to get a new wheelchair. Which the NHS would NOT fund as i didn’t meet their "criteria", so im now paying off a loan for the next 3 years. i also became full time incontinent so im in nappies 24/7
most recently though - Feb. 09 i was in a car crash with my mum & dad which left me being pulled out the car and now suffering severe whiplash which has affected my right side...which again NHS physio have refused to treat because its "psychological" and told me "I should get help" when im doing that. Private physio has now found the swelling is trapping the nerves which is why my right leg wont stand without full leg braces
I am living on my own just recently moved to a bigger place that’s wheelchair accessible inside and out, my mum dad and sister are my full time carers as i need help with personal care and seizure care aswell as day to day living
so...as it currently stands 4 years on...neuros say is psychological...psychological drs wont treat non epi seizures and CD because they don’t believe i have it - im having CBT to overcome the trauma of the spiking. NOT CD
then i get a letter from my neuros after i wrote to them following the crash, as im due to go in June and would like to see my consultant and I want a full review...believe it or not despite being under them for 3 years ive not once seen him...even in admissions only his registrars, I then find out he’s moved overseas and got a "locum neuro" so dont even know how long I got him for...who tells me in this letter that he thinks this is all now down to the codeine im taking...when ive been on it for 4 years and no dr will take me off them - because im allergic to morphine so cant have a lot of painkillers above codine..and then tells me i should have regular physio with my neuro team..but they REFUSED coz they say its psychs problem not theirs
so i am lost, confused and just had enough! since moving house I moved GP surgery and im now on amitryptaline got an appointment next Monday to find out their opinion and to see if its worth moving hospitals again considering my new neuro has told me he cant garuntee that i will see HIM in June so..im going there with no idea if im gunna see my own consultant
mentally life is so up and down, trying to deal with my pshyical issues not knowing what each day is going to bring, im not allowed to work, was declared unfit to do voluntary work and cant be in full time education coz the benefit system don’t allow it!
How do I get by? I really don’t know, I just want closure on this and I don’t think i will ever get it, im sick of fighting and having to prove myself to people and sick of the way drs treat me even is theirs a real physical problem...it gets put down to psych, will it ever change, I don’t think so
my drink was spiked which put me into a 25 minute seizure and ended up spending 2 weeks in hospital, after regaining contiousness 6 hours after i was in hospital..my left side was paralysed, i was moved from my local hospital after a week after my seizures were happening every hour moved to a neurological hospital where i spent a further week having to learn to talk, eat and walk again
was given no answers as to what has happening
i was told "i was faking it" and was refused all tests and treatment and was discharged only just about walking on crutches and seizures still very much happening..by the end of that year (2005) my drs told me i had to go into a wheelchair
an NHS investigation was taken out by my local MP..who managed to get me re-admitted for an MRI scan...but the results were never given as the scan went "missing"
in july 2005 my seizures started turning nasty from 4-6 a day to having potentially fatal epistatus (continuing seizures needed emergency treatment) 3 seizures nearly killed me - where my airways collapsed and paramedics had to put a nasal air tube in...it was still diagnosed as CD and non epileptic seizures, despite me being in intensive care!
in sept 05 i was on holiday in devon and cornwall, when i went into status, i was blue lighted to hospital- north devon district, seizure was stopped as usual with rectal diazepam and was kept in, the consultant there saw me for what the problem was...and asked if theycould increase my doseage of anti convulsants..whcih my local hospital would NOT do. i stayed 2 days while this was done, and over 4 days my seiuzres came down..to 1 a week, and is now every 2 weeks.
the consultant told us as a family to move hospitals before my local one kills me..so i moved to the national hospital for neurology in London, tests were "inconclusive"..i was told by the neuros they couldnt be 100% sure i dont have epilepsy due to the drug i was spiked with and that they dont have my first MRI to compare with the one they have - which was a year after it, so they dont know if anydamnage was done and now had recovered into scaring- causing seizures
the paralysis...well was diagnosed with left Hemiplegia and hemi-sensory disturbance which means left sided paralysis and no feeling in my left side
i can only walk aided, either with crutches or a special walking frame (kaye walker) on short distances only with the help of splints on my left arm and leg - i also suffer with drop foot characteristic of hemi but most of the time im reliant on my wheelchair
i was admitted onto as multi-dispinary rehab programme for 4 weeks which proved nothing and actually made me a lot worse due to the surroundings i was in but the hospital had this belief that you will go in and come out "cured" ive not once refused any treatment ive gone along with everything and 4 years on...still no further
i was promised CBT in London but they wouldn’t accept me until i had local care back up - which my local area was refusing me a psychological assessment...when it did happen, is too late as i got taken of the referral list.
i was refused 1 to 1 therapy even though neurological drs had recommended CBT..i wasn’t allowed it
so i was put onto "group therapy" holistic support to mental health it was, and it was absolutely horrible, the "mental health nurse" just wasn’t a nurse they didn’t want me from the beginning, i was on a fake CPA, and was not allowed crisis care...again i went along with the drs and did everything i was told to do.
Towards the end of last year i was at breaking point, I tried to OD on codeine I just had enough, a big care meeting was called with neuro care & mental health and social services who wanted me hospitalised for my own sake. Mental health team refused and refused medication even though i wanted it and then CBT was refused again. This time the reason was " i had it once im not allowed it again" (had it when i was 18 for differnt reasons)
backed into a corner me and my family faced the financial wall of going private, which is exactly what happened, had a psych assessment within 3 days of referral my full mental health problems were diagnosed - depression - which I already knew then as a result of the spiking now have PTSD, anxiety and panic attacks, social phobia, and food phobia.
Despite the "neurological" side diagnosing Conversion disorder, my new psychiatrist doesn’t believe it ( he used to work NHS and was on the neuro ward when I got admitted in 2005) i am now undergoing CBT 1 to 1 for however long it takes, i am also on fluoxetine and most recently mirtazapine has been added.
Now bearing in mind ALL my physical probs were being diagnosed as psych. July last year put a whole different light on it, as one Saturday night proved...ive had spasms in my back/spine for nearly 4 years drs said it was psychological and gave me Dihydrocodeine and to get on with it. Well this night my spine locked into spasm to the point even moving a finger was agony
the pain increased further to a point of being unable to move, which was extremely frightening. I was experiencing pins and needles down my right side, and was incontinent due to not being able to move from the considerable pain.
Decided to phone the on call doctor as the pain had become unbearable and was getting very frightened.
The doctor called me back and was utterly useless (see my intro thread for more) I made a desperate phone call to NHS direct, who took my details and within 10 minutes a nurse called me back, who was shocked with the advice I had just been given NHS direct said to dial 999.
The Ambulance came and they agreed to transport me to hospital.
At hospital I was seen by a Doctor and given Pethadine to help with the pain and stayed at A&E for a few hours until I was stable.
The Dr examined my back and could feel pressure on the lower right side. He advised me to see my GP to discuss pain relief and further investigations, in which i was then told i could be facing total paralysis and need to see a spinal specialist
it was then found i have scoliosis - curve of the spine, in which im now having regular physio - private as NHS refused!!!! and am in a spinal brace to prevent the curve worsening...now someone correct me if im wrong. That is NOT psychological???i was unable to walk for 9 weeks and couldn’t lay on my spine so had to sleep sitting up, until my community neuro team OT managed to get me a specialised hospital style profiling bed with pressure matteress as the pressure between a "normal" one was to great on my spine, i also had to get a new wheelchair. Which the NHS would NOT fund as i didn’t meet their "criteria", so im now paying off a loan for the next 3 years. i also became full time incontinent so im in nappies 24/7
most recently though - Feb. 09 i was in a car crash with my mum & dad which left me being pulled out the car and now suffering severe whiplash which has affected my right side...which again NHS physio have refused to treat because its "psychological" and told me "I should get help" when im doing that. Private physio has now found the swelling is trapping the nerves which is why my right leg wont stand without full leg braces
I am living on my own just recently moved to a bigger place that’s wheelchair accessible inside and out, my mum dad and sister are my full time carers as i need help with personal care and seizure care aswell as day to day living
so...as it currently stands 4 years on...neuros say is psychological...psychological drs wont treat non epi seizures and CD because they don’t believe i have it - im having CBT to overcome the trauma of the spiking. NOT CD
then i get a letter from my neuros after i wrote to them following the crash, as im due to go in June and would like to see my consultant and I want a full review...believe it or not despite being under them for 3 years ive not once seen him...even in admissions only his registrars, I then find out he’s moved overseas and got a "locum neuro" so dont even know how long I got him for...who tells me in this letter that he thinks this is all now down to the codeine im taking...when ive been on it for 4 years and no dr will take me off them - because im allergic to morphine so cant have a lot of painkillers above codine..and then tells me i should have regular physio with my neuro team..but they REFUSED coz they say its psychs problem not theirs
so i am lost, confused and just had enough! since moving house I moved GP surgery and im now on amitryptaline got an appointment next Monday to find out their opinion and to see if its worth moving hospitals again considering my new neuro has told me he cant garuntee that i will see HIM in June so..im going there with no idea if im gunna see my own consultant
mentally life is so up and down, trying to deal with my pshyical issues not knowing what each day is going to bring, im not allowed to work, was declared unfit to do voluntary work and cant be in full time education coz the benefit system don’t allow it!
How do I get by? I really don’t know, I just want closure on this and I don’t think i will ever get it, im sick of fighting and having to prove myself to people and sick of the way drs treat me even is theirs a real physical problem...it gets put down to psych, will it ever change, I don’t think so
