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Campaign on Conversion Disorder

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davalay

Guest
Hi All,
Following on from my earlier post, I've just had an email from my local Primary Care Trust Manager. He is trying to arrange neurological retraining for local GPs about Functional Neurological Disorder and how to treat and recognise it.
Remember, if you think, what can I, one person do, to change anything, the news in these last two posts from me have simply been the result of two emails and are hopefully only the tip of the iceberg. If everyone sends just one email or changes just one doctor's mind about this disorder then that will hopefully cascade out to many others.
 
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bonica

Active member
Joined
Aug 21, 2010
Messages
37
That's brilliant davalay & probably the best news ever posted on this forum. I hope everyone follows suit because as you said:

Remember, if you think, what can I, one person do, to change anything, the news in these last two posts from me have simply been the result of two emails and are hopefully only the tip of the iceberg. If everyone sends just one email or changes just one doctor's mind about this disorder then that will hopefully cascade out to many others.
 
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yellowted

Active member
Joined
Jan 23, 2011
Messages
44
Location
UK
hi bonica, i would love to get involved, i have not been dxd as CD but as dissociative motor disorder (i think the only person in the world to be given this dx) but have found out it is one in the same thing! i strongly believe that CD,DMD and FND should be given one name which everyone recognises so people do not waste years of their life trying to find information on each one and so treatment can be unified across the country as presently there seems to be no rules about how to treat any of hese, CD seems better defined than DMD as no one in my area knows how to treat me or who to contact to find out!!! they have stumbled through to a point that their 'only option' is to put me in neuropsychiatric rehab to 'find out whats wrong with me' for up to 6 months! ok so they got there in the end, it only took 2 years and me pushing the whole time. all we are waiting on is funding then to see if i fit the criteria, and the then i will be put on the waiting list to go in so probably next year sometime i guess!

great site i have got lots of new info from here thankyou allxxx
 
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bonica

Active member
Joined
Aug 21, 2010
Messages
37
Hi & welcome yellowted! Glad you found the forum & the much needed info. I'm suffering from exhaustion & a particularly bad flare-up of arthritis lately, so bear with me if I'm not very articulate today. I've read yours & davalays recent posts & will do my best to respond.

The great majority of people with CD/FND/DMD will continue to get a raw deal, so it's really up to us to become informed campaigners & raise awareness as well as instigate better treatment, easier access to aids, home adaptations, benefits & care packages. This is hard enough for those with accepted disabilities. When it's thought to be "all in the mind" & trauma related, it's much tougher all round. Then we've got the Coalition preparing to stampede disability with their policies to cut welfare & reduce DLA recipients by 20%! I don't say this to put anyone off, but simply to re-iterate the importance of being proactive.

I think the reason no-one knows how to treat this disorder is because no-one knows anywhere near enough about it, very little research is being done, too many in the medical profession cling to Freud's oudated & unproven theories hence so many of us are fobbed off as patients who will recover in a few weeks. For those who don't recover or recover briefly then relapse or whose symptoms endure but fluctuate etc, again an old theory abounds that more tests are pointless, encourage sufferers to remain symptomatic & are a waste of NHS money & time!

The DWP's own rules on DLA stipulates that illnesses classified as psychosomatic & manifest in physical disabilities should be treated as actual physical disabilities. That's not word for word btw so I'll find my PDF on this & copy & paste it here.
Maybe seperate threads pertaining to various types of info & patients rights etc would be a good idea. These could be made into stickies for easy access.

Re; Neuropsychiatric rehab. This doesn't have to be on an in-patient basis. I'm sure this can also be done as an out-patient.
 
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davalay

Guest
Hey Bonica, sorry you're not well, wondered why I hadn't heard from you. You saw we got a Sticky! Mischief was great at putting it up. I've now said all we need is a name change to FND and we are laughing!
Like Bonica says yellowted, I think neuropsychiatry can be on an outpatient basis, however I did spend 3 months in neuro rehab to get me able to move more freely; overcome the incontinence; understand the long term effects, etc. then started on an outpatient basis both physio and psychiatric. the psychiatric side is to see closure on the childhood abuse problems, but mainly to help me live easier with a long term, chronic condition (and I think my consultant has an interest in FND so she is using me as a research study although she has never said this). The physio is to make sure I continue to use the correct exercises after a crash and to show me new ones if I do manage to improve more physically between crashes - although as they are now happening every three weeks I am not really having the time to improve before another hits.
As to the question, is it a long term condition then, again as Bonica says, if you've had it for two years then I think you're stuck with it for a long time. I am now into my sixth year (third where I have been severly disabled). However, I only started therapy last summer so maybe, while it won't go away, I will be able to manage the symptoms much easier. Don't let anyone fob you off with, 'if we get the psychological stuff sorted you'll be miraculously cured'. Trust me, it won't happen. I asked my psychiatrist straight out a couple of weeks ago, is this a cure we are trying to get, and she said no, there isn't a cure, we are just trying to make it easier for you to understand the symptoms. I am of the opinion that the dissociation suffered as a result of this disorder is one of the symptoms not a precurser to it. Sorry I can't be more optimistic yellowted. Whether its worth losing your house over - I know the most important thing for me is to pay my mortgage everymonth. I waited 45 years for my dream home and I don't want anything to take it away from me. If it isn't as important to you, then give it a go. you could always go for 4 weeks and if it isn't helping (you'll know by then if the medical staff are any good at their jobs) then don't stay.
 
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yellowted

Active member
Joined
Jan 23, 2011
Messages
44
Location
UK
hi Bonica & Davalay,
Sorry to hear you are suffering Bonica,
I would really love the DWP statement of how this should be treated as i could really use this in my battle to get my home adapted! my house was my late partners parents home since 1930, my partner was born and died here, i have lived here for 18 years, i have sad memories of when my partner was ill but even more happy ones of when he was well. my home is very important to me, it was left to me so i would always have a home so i really do not want to lose it, but i really would like to get as well as possible too so this is an extremely difficult decision for me to make, i have just found out that my care team applied for funding to put me in the Maudsley back in 2009 and it was rejected on the grounds that my borough does not comission inpatient stay from the Maudsley, so i am not convinced they will approve it this time, in one sense i hope they don't then i know my home is safe, but on the other i would love to go to get as well as i can. i know i will havew an assessment at Kings hospital first before they decide if i am suitable to go in and think i will say there about the chane of losing my home if they keep me for more than a month, see if they and give me home release every few weeks for a weekend so my benefits keep going so i can pay the mortage! if they can then i will not hesitate about going in!i don't think there are any neuropsychiatrists in my area as i have been told the Maudsley is the closest place, it is the opposite side of London to where i live, but if they can see me as out patient then i wouldn't mind even having to sleep near there a few nights a week so i an in time for treatment, anything so i can keep my home!!!
I agree with you, i have a strong feeling this is not going to be a quick fix job, regardless of what my care co ordinator thinks, its just so frustrating that on the grounds some people recover quickly they assume everyone will so have nothing in place for those who don't!
any how thats me ranted out for the evening!!!
Take Care both of you Xx
Ted x
 
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FightingHard

Member
Joined
Jun 13, 2011
Messages
5
Hi all, I realise this thread was started a fare while agi, but I have just had a confirmed diagnosis of CD.

I tried to apply for Disability Living Allowence, but was told that because what I have isn't a perminant disability that I would not be able to claim.

I've now applied for Employment and Support Allowence as that's the only other type I can apply for. I am due to have the phonecall tomorrow to see if I am eligable for this instead.

I cannot walk unaided, some days can't even walk at all, I am perminantly catheterised because my bladder has gone into failure, I can only see out of half of my right eye, suffer dizziness almost every minute I'm awake, my left arm goes in and out of weakness and over the past few days my sight has began to fail. I would love to be working (I used to work as a carer, and loved my job!) but with all of these symptoms it's virtually impossible.

Does anyone have any advice on the benefits because I have nearly run out of savings and can't love on fresh air unfortunately.
 
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bonica

Active member
Joined
Aug 21, 2010
Messages
37
Here's the section on Dissociative Disorders, which includes Conversion Disorder, in the DWP's Disability Handbook:

http://www.benefitsnow.co.uk/handbook/dissociativedisorders.asp

Unfortunately, CD IS permanent for many people, as evidenced by this & other forums, so don't be fobbed off by them telling you it isn't. Yes, for some it's short-lived & never to return but others aren't so lucky & suffer for years.

Take Care.

Have also PM'd you
 
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yellowted

Active member
Joined
Jan 23, 2011
Messages
44
Location
UK
ask your GP or care manager to refer you for a self directed support assessment. this is the new in thing! it is a payment which allows you to choose your own care/support. it consists of a few forms and a financial assessment , but help should be offered by either adult services , social worker or recovery worker to help you complete them. the payments are every month or a one off, it can be used for employing a carer/pa not only for in your house care, but for assisting you to socialise, exercise etc and to buy aids which are not provided by the services
I get it and it has allowed me to become an active member of society again, I employ a Personal assistant, bought software which reads and types what I say, it is typing this, all i am doing is talking! I now volunteer as it bought me a mobility scooter!

Have you applied for a blue badge or Taxi card?

I have Dissociative motor disorder, a form of conversion disorder, and get DLA, the trick is to apeal the decision, often they refuse first time around then give it! you need to say your condition is deteriorating, and complete the form as to how you are on a worst day not a good one! also say what help/assistance you need not what help/assistance you get

hope this helps.
good luck and apologies for any spelling mistakes!
 
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Divinity

Well-known member
Joined
Oct 28, 2010
Messages
56
Location
Gloucester,UK.
Hi all, I realise this thread was started a fare while agi, but I have just had a confirmed diagnosis of CD.

I tried to apply for Disability Living Allowence, but was told that because what I have isn't a perminant disability that I would not be able to claim.

I've now applied for Employment and Support Allowence as that's the only other type I can apply for. I am due to have the phonecall tomorrow to see if I am eligable for this instead.

I cannot walk unaided, some days can't even walk at all, I am perminantly catheterised because my bladder has gone into failure, I can only see out of half of my right eye, suffer dizziness almost every minute I'm awake, my left arm goes in and out of weakness and over the past few days my sight has began to fail. I would love to be working (I used to work as a carer, and loved my job!) but with all of these symptoms it's virtually impossible.

Does anyone have any advice on the benefits because I have nearly run out of savings and can't love on fresh air unfortunately.
Sorry if this sounds rude or something but what proof is their that you actually have Conversion Disorder and not something else?

The things you say that you are having problems with sound like symptoms of other things that have similar symptoms to Conversion Disorder.
Have you had a lumbar puncture test done or a mri done with a contast agent?
Or were you just told that you had Conversion Disorder and thought to yourself well I must have that as they are saying that I do?

I ask this because you say that you can't walk unaided, bladder failure, eye problems, weakness in limbs and what seems like possible vertigo.

I apologise in advance if there is sufficient proof that you have Conversion Disorder. :)
What help and support do you have?
 
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FightingHard

Member
Joined
Jun 13, 2011
Messages
5
Thank you Bonica, I have replied by email.

Yellowted, I will ask about the Self Directed Support Assesment, but I will speak to my mental health care coordinator instead of my GP as I'm guessing it's more in her area than his.
I have a blue badge already, have has this for a few months now.
I spoke with the JobSeekersPlus people this morning and they are going to let me know what benefits I am entitled to if any or none. I did stress that I was not working, not able to work and have little savings left to live on. I hope this manages to speed up the process a little because if this fails I need a new idea.

Divinity, I believe that the evidence that they are going on for the diagnosis of Conversion Disorder is the fact that I had a clear MRI scan (done 5 months after I woke one morning with no use of my legs!) and the fact that I have a pre-diagnosed emotionally unstable personality disorder.
I haven't had a lumbar puncture test done, or the MRI with contrast agent, just the normal MRI.
I have accepted the CD as a diagnosis, although I have always wondered if they'd have run more tests if I didn't already have a diagnosed mental health problem. This may sound a bit off, but it's always how I've felt.
The only help and support I have is of my parents, best friend and fiance. My GP does as much as he can, but obviously sees tens of patients more than just me during a day. I have a neurologist whom I've only seen 3 times in 7 months (twice in hospital after being asked by the medical team looking after me, and once as an outpatient) and I see a urologist whom I've only just started seeing but seen once before my op, once on the day of my op and twice since on ward rounds.
In terms of social support or support for living, I don't get anything.
 
The_Cigarette_Monster

The_Cigarette_Monster

Well-known member
Joined
Mar 9, 2011
Messages
304
Location
...
Well you've certainly educated me; I thought cd was just a physical way of displaying emotional pain (like I knew a girl who was rushed into a&e cos of belly pain but was told it's all in the mind cos her mum had recently died and she hadn't been coping) but I've gone onto Jon Stones webby and ts completely changed my view! I hate it when people are ignorant of certain conditions, even epilepsy which is reallycommon!
Do you ever feel accused when speaking to a neuro? Because I remember going to one who told me I was faking it because of childhood trauma, hadn't even asked about my history, and it was only when we got video evidence that he believed me. It must be awful to have that all he time. When I was 'accused' (sorry if that's the wrong term) I felt awful, kept thinkin it was all myfault and that I was making myself have fits... God I feel a lot if sympathy towards you guys :) xx
 
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tinkerbell007

Well-known member
Joined
May 23, 2010
Messages
210
Hi Fightinghard,

Who ever has told you cannot have DLA is wrong im currently fighting them I have had it for three years and the welfare rights are backing me. No one knows how long it will last I would re apply or appeal the decision I would also ask your local CAB or welfare rights for advice. I hope this helps. As for esa I have no idea because im on incapacity benefit and dregging being moved onto ESA. I cannot move at all and use dragonnet and my voice to reply to letters emails etc.
The reason I lost it is because my consultant did not fill in the form properly and basically put there was nothing wrong with me and has since admitted he did not take enough time and does not care about the form but I am ill and should not work and need constant care. Idot to say the least I do not see him anymore.
 
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Divinity

Well-known member
Joined
Oct 28, 2010
Messages
56
Location
Gloucester,UK.
Well you've certainly educated me; I thought cd was just a physical way of displaying emotional pain (like I knew a girl who was rushed into a&e cos of belly pain but was told it's all in the mind cos her mum had recently died and she hadn't been coping) but I've gone onto Jon Stones webby and ts completely changed my view! I hate it when people are ignorant of certain conditions, even epilepsy which is reallycommon!
Do you ever feel accused when speaking to a neuro? Because I remember going to one who told me I was faking it because of childhood trauma, hadn't even asked about my history, and it was only when we got video evidence that he believed me. It must be awful to have that all he time. When I was 'accused' (sorry if that's the wrong term) I felt awful, kept thinkin it was all myfault and that I was making myself have fits... God I feel a lot if sympathy towards you guys :) xx
That is exactly how I feel, from my point of view that is how I feel they are being with me.
 
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