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my life with CD - confused & lost

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pink_angel

New member
Joined
Apr 20, 2009
Messages
4
Location
south coast, uk
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
 
M

mollycat

Active member
Founding Member
Joined
Mar 25, 2008
Messages
38
Location
Buckinghamshire
Hello and :welcome:

Firstly sorry no-one has replyed to your heartfelt post, I have been offline for just over a week so i apologise. :redface:

You have been through more than most and it is understandable you are frustrated by it all - I can tell you though you are not alone and i personally have come up against similar over the years. :hug:

Seemingly once a diagnosis of CD is handed to us from that point forward no-one will take any symptom or problem seriously, as the treatment for CD is NO treatment or aknowledgment of symptoms at all.

I am hoping your appointment went well on monday?? and the CBT starts helping - I too have never managed to get any help on the NHS so can empathise with your position, paying privately is our only option i'm afraid - even when we can least afford it - but we ARE trying to help ourselves and that is a positive thing.

I am due to go into hospital to have a ( hopefully benign ) tumor removed from my uterus soon but it has taken my GP and other docs years to take me seriously. I have been back and forwrd to the GP with signs and symptoms for 2 years and all these have been put down to the CD as menstrual problems apparantly are one of the common issues altough not once in that time was I examined at all - it was only once i kept passing out from the blood loss and pain at work that i was finally granted an ultrasound scan which YES low and be-hold has found the tumor and it has certainly been there a good while as it is large and i need an operation asap to remove it! I was shocked and angered and felt incredibly hurt that it has taken me years of pain and suffering to find out its a tumor and someone who had not got the CD diagnosis ( which I dispute ) would only have had to wait weeks for a scan with all the signs and symptoms I have. The Gynae guy was mad as hell at the treatment i had, had but could not really help other than trying to fit me in asap for the operation - still waiting for a date ( good old NHS in UK ) but at least i know I am not going completly mad!

Anyway I digress - I do feel for your position and as above it is even more frustrating when you have been suffering unneccessarily with your back for a while only to be proven a "real" medical condition. CD is the only mental illness where refusal of treatment and tests is the treatment - it is stuck back in the 1900's treatment and even people with mental illness get sick and usually they do not have to prove they are sick to be tested - they are tested to find out why they are sick - where as CD sufferer's are refused. I do feel it needs highlighting that we are treated or should I say NOT treated fairly.

You ask will it ever change?? the appalling treatment and total lack of knowledge of CD even in the mental health field i come accross barriers and ignorance - bearing in mind also that my Neuro Psychiatrist gave me a total clean bill of mental health and does not believe it is a mental health issue ( almost identical to yours ) it's the neuro themselves that treat me this way and in turn pass this on through to my GP and I am just always fighting my innocense and validating my issues just have you have done.

We are the only people who will change it - but it seems people are so afraid to speak out about CD and it is a swept under the carpet mental illness, I mean if our brains can manefest a serious neurological illness as a conversion of a stressful event then surely we should have some help out there?? I will keep looking and campaigning till we find an answer.

Hope you are doing well just now and email me if you would like to.

Take good care and many thanks for joining the forum.

Mollycat :grouphug:
 
C

chezz

Member
Joined
Jul 9, 2009
Messages
5
Location
suffolk,england
:grouphug:dear pink angel, god to totally sympathise with you,i have only just jioned this site but most definatley seem to be in a similar position to mollycat and yourself,i so hope you get things sorted soon,have you looked at telex who is on here ther is some info on a clinic that could maybe help lol
 
G

gardenerman

Member
Joined
Jul 12, 2009
Messages
5
Location
California
My advice is to try something other than CBT. It's superficial, cheapest of the cheap no-good one-on-one therapies. Unfortunately, the best therapy, psychoanalysis, is so expensive nobody but rich people can use it.

Fortunately, however, all psychoanalytic institutes have training programs where students will treat you based on ability to pay. And the students at a psychoanalytic institute are worlds more competent than any CBT practitioner, because in order to be accepted at a psychoanalytic institute as a student, one must either be a physician or have a Ph.D. and demonstrate that he has made major contributions to his or her field of study. Once accepted to a psychoanalytic institute, the curriculum lasts five to twelve years.

So, since your case is so severe, you would probably be welcomed with open arms as a classic case. You should read Freud and Breuer's "On Hysteria". Particularly the case of "Anna O." You will be amazed by the similarities.

Incidentally; as for the scoliosis, hemiparesis and/or hemipraxia definitely lead to scoliosis.
 
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GrizzlyBear

Well-known member
Founding Member
Joined
Sep 22, 2008
Messages
971
Unfortunately, the best therapy, psychoanalysis, is so expensive nobody but rich people can use it.
This is not necessarily true in the UK. I don't pay a penny for any of my therapy.
 
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