P
pink_angel
New member
i apologise for the VERY long post, just feel its better to get everything out when im able to...my names cat and im 23, single and live on my own - but have carers
as a result of physical and verbal bullying at high school, i suffered with clinical depression, leading to me self harming, which eventually led to me developing bulimia. with my weight at 6 stone, i was sent for an emergency psyciatric assesment, where evenutally got CBT which i had every week for 20 weeks.
i improved being put on eating plans and weight being monitered, i was finally discharged from mental health services at 18 where i started to begin to life my life the way it should be.
Then less than 2 months later, my life changed beyond all recognision. 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, and spent most of 2005 and 2006 due to having potenolly fatal epistatus (contiuing seizures needed emergency treatment) 3 seizures nearly killed me
also realising my left side was paralysed, having to learn to talk, eat and walk again..i left hospital only just about walking on crutches...by the end of that year (2005) my drs told me i had to go into a wheelchair
that is how it remained, i left my local hospital neuro team after i was told "i was faking it" and was refused all tests and treatment, 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"
i moved to the national hospital for neurology in london, tests were "inconsulsive"
i was diagnosed "conversion disorder", causing seziues - which they arnt conclusive on the cause so being treated for epilepsy - i am on anti-convulsant medication..which i have to add bought my seizures down from 4-6 a day to 1 a week no been every 2 weeks the last 2 years and non epileptic attack disorder - which i do not accept and neither does any of my care team and psychological "drs"
i also have 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 beleif that you will go in and come out "cured" ive not once refused any treatment ive gone aloing with everything and 4 years on...still no further
i was promised CBT at the tavisock in london but they wouldnt accept me until i had local care back up - which my local area was refusing me a psycological assesment...when it did happen, is too late as i got taken of the referal list.
i was refused 1 to 1 therapy even though neurological drs had reccomened CBT..i wasnt allowed it
so i was put onto "group therpay" holistic support to mental health it was, and it was absolutly horrible, the "mental health nurse" just wasnt a nurse they didnt want me from the beginning, 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 codine 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"
backed into a corner me and my family faced the finicial wall of going private, which is exactly what happened, had a psych assesment within 3 days of referal 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 diagnosinng Conversion disorder, my new psychiarist doesnt belive 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 phsyical probs were being diagnosed as psych...july last year put a whole differnt light on it, as one saturday night proved...ive had spasms in my back/spine for nearly 4 years drs said it was psychologcal and gave me dihydrodoeine 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 asked what the problem was, and what medication I was taking.I was taking Dihydrocodeine 30mg every 4-6 hours, which is what is stated on my prescribed bottle. - which i add is the medical maxium allowed!
The Dr then thought that Dihydrocodeine was co-codydromol, in which I had to keep correcting him he then asked if I had any allergies to which I stated I was allergic to morphine and paracetamol.
I also informed him that I suffer with seizures and I had to explain what my anti-convulsant medication was and also made me spell the same of the medication, as he did not know what they were or what they do.
The doctor declined to visit me and advised me to increase my Dihydrocodeine even though I had informed him I was taking the highest dose allowed, and he also advised me to take paracetamol, despite me informing him that I was allergic to it. He also advised to put a hot water bottle on my back and see my GP the next morning. The doctor then ended the call
Having been left with no one to turn to,
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 and was trying to keep me calm on the phone as I was in so much pain and in a state of panic.
NHS direct said to dial 999.
The Ambulance arrived they took a set of OBS, however they were unable to assist with pain relief, as they were not trained to do so.
I explained what had happened on the telephone with the Dr and that I was scared to follow his advice as he had no understanding of my situation or the medications I was taking, 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 and 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
i did put in a formal complaint about the "on call dr" and after the call was listened back with the medical board..it was found he was medically incompetant and was sacked and referal to the general medical council...i was going to sue but just couldnt afford to what with paying private healthcare
it was then found i have scoliosis - curve of the spine, in which im now having reglar 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 couldnt lay on my spine so had to sleep sitting up, until my community neuro team OT manaanged 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 didnt meet their "criteria" so im now paying off a loan for the next 3 years. i also became full time incontinant 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 physios have refused to treat becuase 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 thats wheelchair accesable 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
as a result of physical and verbal bullying at high school, i suffered with clinical depression, leading to me self harming, which eventually led to me developing bulimia. with my weight at 6 stone, i was sent for an emergency psyciatric assesment, where evenutally got CBT which i had every week for 20 weeks.
i improved being put on eating plans and weight being monitered, i was finally discharged from mental health services at 18 where i started to begin to life my life the way it should be.
Then less than 2 months later, my life changed beyond all recognision. 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, and spent most of 2005 and 2006 due to having potenolly fatal epistatus (contiuing seizures needed emergency treatment) 3 seizures nearly killed me
also realising my left side was paralysed, having to learn to talk, eat and walk again..i left hospital only just about walking on crutches...by the end of that year (2005) my drs told me i had to go into a wheelchair
that is how it remained, i left my local hospital neuro team after i was told "i was faking it" and was refused all tests and treatment, 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"
i moved to the national hospital for neurology in london, tests were "inconsulsive"
i was diagnosed "conversion disorder", causing seziues - which they arnt conclusive on the cause so being treated for epilepsy - i am on anti-convulsant medication..which i have to add bought my seizures down from 4-6 a day to 1 a week no been every 2 weeks the last 2 years and non epileptic attack disorder - which i do not accept and neither does any of my care team and psychological "drs"
i also have 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 beleif that you will go in and come out "cured" ive not once refused any treatment ive gone aloing with everything and 4 years on...still no further
i was promised CBT at the tavisock in london but they wouldnt accept me until i had local care back up - which my local area was refusing me a psycological assesment...when it did happen, is too late as i got taken of the referal list.
i was refused 1 to 1 therapy even though neurological drs had reccomened CBT..i wasnt allowed it
so i was put onto "group therpay" holistic support to mental health it was, and it was absolutly horrible, the "mental health nurse" just wasnt a nurse they didnt want me from the beginning, 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 codine 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"
backed into a corner me and my family faced the finicial wall of going private, which is exactly what happened, had a psych assesment within 3 days of referal 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 diagnosinng Conversion disorder, my new psychiarist doesnt belive 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 phsyical probs were being diagnosed as psych...july last year put a whole differnt light on it, as one saturday night proved...ive had spasms in my back/spine for nearly 4 years drs said it was psychologcal and gave me dihydrodoeine 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 asked what the problem was, and what medication I was taking.I was taking Dihydrocodeine 30mg every 4-6 hours, which is what is stated on my prescribed bottle. - which i add is the medical maxium allowed!
The Dr then thought that Dihydrocodeine was co-codydromol, in which I had to keep correcting him he then asked if I had any allergies to which I stated I was allergic to morphine and paracetamol.
I also informed him that I suffer with seizures and I had to explain what my anti-convulsant medication was and also made me spell the same of the medication, as he did not know what they were or what they do.
The doctor declined to visit me and advised me to increase my Dihydrocodeine even though I had informed him I was taking the highest dose allowed, and he also advised me to take paracetamol, despite me informing him that I was allergic to it. He also advised to put a hot water bottle on my back and see my GP the next morning. The doctor then ended the call
Having been left with no one to turn to,
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 and was trying to keep me calm on the phone as I was in so much pain and in a state of panic.
NHS direct said to dial 999.
The Ambulance arrived they took a set of OBS, however they were unable to assist with pain relief, as they were not trained to do so.
I explained what had happened on the telephone with the Dr and that I was scared to follow his advice as he had no understanding of my situation or the medications I was taking, 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 and 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
i did put in a formal complaint about the "on call dr" and after the call was listened back with the medical board..it was found he was medically incompetant and was sacked and referal to the general medical council...i was going to sue but just couldnt afford to what with paying private healthcare
it was then found i have scoliosis - curve of the spine, in which im now having reglar 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 couldnt lay on my spine so had to sleep sitting up, until my community neuro team OT manaanged 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 didnt meet their "criteria" so im now paying off a loan for the next 3 years. i also became full time incontinant 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 physios have refused to treat becuase 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 thats wheelchair accesable 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
