[vellatutchai]

Hi all
I am new to the forum and not sure if this is the right place to go for help and reasurance.

I am a lady of 58 years who has worked all her life, had children and returned to work.
Over the last few months my health has deteriorated dramatically and am now paralysed down one side including my face and throat.
Neurological consultant has carried out all his tests and has now declared that they are all clear. I have asked for a diagnosis and all he could come up with was Non Organic Neurological Disorder which is fine as far as he is concerned, but I have these problems and seem now to be cast off into the unknown.
Can anyone out there give me any advice, are you suffering in this way, can we still claim any benefits?
Having worked full time for over 40 years to be thrown on the scrap heap is very frustrating. I have never claimed any benefits at all through my working life and now I need them I am not sure where to go.
Please help if you can, any advice is welcomed.

[Priorylady]

If you are unable to walk, dress unaided, need help getting in/out of bed, need someone with you outside the house etc you could try applying for disability living allowance

[medusa]

Hi vellatutchai

I well understand the 'now what?' aspect of your issue, although mine is a very different collection of problems to yours. It can be really frustrating applying for any sort of benefit or assistance when the health problems that you have aren't a 'ticky box' complaint.

Spinal arthritis? Oooh yes, we have a ticky box for that, and we're expecting you to have this, this and this as a problem. We can understand that and it will all go quickly.

Non Organic Neurological Disorder? No idea what you're talking about and you'll have to go into everything in extreme detail before we even admit that you may be entitled to some help.

If you have paralysis and struggle with self care, dressing, cooking/preparing a main meal or getting about inside and outside then you DO qualify for some degree of help with DLA (or PIP, as they may put you on now). The problem comes with the gigantic forms that need to be filled out in order to access any of the help, and the level of detail that you are likely to need to go into for the benefit people to understand what's happening for you on a practical level.

My advice would be to get the forms and to ask someone from the CAB or similar to fill them in for you. They are more aware of the sort of things that you need to focus on with the information that they are looking for so that you can fill out the forms fully.

In terms of the forms, they don't really want to see 'I need help getting up'. What they want is 'I can't roll to my right or use my right hand in assisting me out of bed in any way, and getting from lying to sitting hurts my back. My right foot is numb when I wake up so getting to a standing position can result in me falling because I can't get the weight evenly on my numb foot, and I can't reach behind me with my right arm so I struggle to put on my bra or fasten any waistbands or buttons'.

You will also need lots of evidence from your hospital consultant. If you ask them nicely they may well send you a copy of your medical notes, or a section of them, along with a summary of what they perceive are the effects and likely prognosis of your condition. You'll also need a letter or similar from your GP and whatever physiotherapists, occupational health or other nursing/therapy practitioners that you've seen, to support your account of how you are and how your disabilities affect your daily life. You can get started with this before you even get the forms to fill in.

I hope you find a way forwards from where you are. The benefits system is no help at all when it comes to getting better, but it opens the way to a whole load of other things which are helpful with the things that aren't going to get any better, like an allowance for someone to come and help you at home with your personal care if you need it, a blue badge or a mobility pass for public transport if appropriate.

[vellatutchai]

Hi
Thank you for your information. I am in the process of applying for DLA or PIP as they now call it. Trouble is they "want a diagnosis" I gave them what I was told was the diagnosis, but they do not recognise that as a debilitating condition. I got in touch with the neuro consultant who said I cannot help you any further, that is your diagnosis. I hae been in touch with my GP who informs me due to the fact they cannot confirm my condition will last for another 6 months they are unable to complete the DVLA form.
I am also having problems getting travel insurance sorted out. We have holidays booked later this year. I rang the insurance company an gave them my diagnoses, they then needed to know exactly how I was disabled. I informed them of everything only to be told "I don't have a tick box for that" some time later they came back to me and said according to their medical experts I had suffered a stroke, I argued that my consultand had ruled that out, but they insisted that was their diagnosis and I would not be covered for anything related to a stroke.
The who thing is a nightmare.

[ccit]

As already mentioned, it will be an uphill struggle to obtain benefits in the absence of a diagnosis and support of doctors. Two courses of action might be:
1. Have you thought about asking your GP for a second opinion? You are entitled to this.
2. Experiencing loss of movement must be very stressful for you so I wonder if you have been offered any treatment such as physiotherapy or counselling? If they can't give you medication then some sort of advice to help you cope could be useful. It could also help with any future DSS claim.
Not having any knowledge of travel insurance, I can't comment on that problem but maybe stay in this country for holidays until things are sorted out? At least if you are not well you can come home.
It is reassuring to know that there is nothing physically wrong but it must be difficult to cope with not knowing why these things are happening. I do hope that the condition will improve over time.

[fallen angel]

http://www.neurosymptoms.org/#/in-the-mind/4533053408

this web site has some intresting reading
it may be of help to you ,, hope the link works

regards
fallen angel

[HelenaC]

non organic basically means "unexplained" so they don't know in a nutshell.