Moose here - again. Following on from my epilepsy thread.

[moosemama]

Hi folks, we were up to 995 posts, so I thought I'd better start a new thread

You go Couthy!

Let us know how you get on.

Nope. Stupid GP sent the letter from the Neuro I saw last, in 2008, that said I had NEAD. (Though surely having non-epileptic seizures still MEANS that you ARE having 'fits, seizures or blackouts' for the purposes of DLA?!?

The GP wrote that he had asked for witness statements that had, as yet, not been provided.

Well, twat end GP, that might just be because YOU didn't come up with an adequate answer as to how I was meant to get a (then) 14yo with SN's to provide a written account, or my 10yo with behavioural problems to provide a written account, or sonehow 'MAKE' my Ex do a written account when he had been asked to for 6 effing months.

(What was I meant to do, hold a gun to his head until he did write a written account, when he's severely dyslexic and has Autism himself FFS?!)

The only other witnesses were the staff in my local supermarket.

What am I meant to do? Go up to them and say here's my club card, oh, and could you also give me a written account of what you saw on the two recent occasions that I had a seizure in your store?!

Or there's the Gynae consultant and nurses that helped me when I had multiple seizures after my aborted colposcopy under local.

Problem is, when the Gynae consultant wrote to the GP about me needing it done under general, all the letter spoke about was how the procedure was aborted as I was 'screaming in pain'. According to my Ex (and what I thought), there WAS no screaming - just groaning and clenching my fists. Mostly because it FUCKING HURT.

Not diddly squat mention about the fact that I had 6 seizures in the waiting room afterwards, that required a Nurse and a student nurse to help me with, or of the fact that he himself (the Gynae consultant) came out to help, or the fact that when the nurses and him got me into a wheelchair and wheeled me into another room (this is all what Ex has told me) that I then had another 4 seizures in that room, to the point where the nurses had to hold me head up...

I don't remember all this, but this is exactly as my Ex told it to me. All I remember is sitting in the waiting room filling in a form, the world going 'fuzzy' around the edges - it's almost like pins and needles in my eyes that I can actually 'see' like millions of dots in my vision, I felt funny, sort of 'other worldly', then I was on the floor on the waiting room with loads if people looking at me, then 1 second later I was in a wheelchair in another room - i vaguely remember being really horrid and shouting "I just want to sleep, just let me go to sleep" then 1 second later I was on a bed waking up in that room.

I can't remember the Nurse's name. I can't remember the student nurse's name. The Gynae consultant obviously couldn't be arsed to add in anything about the seizures the first time round, so it's unlikely that I'm going to be able to get him to in the next 4 weeks either.

So basically, DLA aren't going to pay me until my GP decides I do have epilepsy, and he and whatever Neuro I see aren't going to believe I have epilepsy without 22 signed and hand delivered fucking witness accounts, and probably videotape evidence too.

Oh - and you DON'T get 3 months to provide the additional evidence in cases like this any more.

I have FOUR FUCKING WEEKS to prove to DLA that I am entitled to it, or I will have to pay back every penny they've paid me (over £1000) AND I will have to pay back all the additional severe disablement allowance and disablement allowance top ups that have been paid on my IS. Which would be nearly another £2000.

CUUUUUUUUUUNNNNTTTTTSSS.

The GP has told me that he is happy to provide me with a note stating that I am unfit for work (WTFuckingF so I'm too disabled to work yet don't have any fucking disabilities WTF?!).

He also wants me to see a Neuro. Well, that's great, but if I don't see one AND get the report in the next 4 weeks, it's of fuck all use when it comes to my DLA, isn't it?!

And we all know how likely it is that I will see a Neuro within 4 weeks, don't we...

I asked him if I should stop taking the Gabapentin - his response was well its not helping...yes it fucking IS YOU TWAT.

Maybe if he actually listened to me, he'd know that when he first put me back on to Gabapentin, 600mg/day stopped around 80% of the seizures. After around 5/6 months, however, they started getting more and more frequent again.

Then my dose was upped around a week ago. Funny how my seizures have lessened loads since then, isn't it?!

AND, and and and, if it IS NEAD, then why the FUCK has he kept me on Gabapentin, raised the dose etc, when if it IS NEAD, surely he should have sent me to a fucking psychologist or shrink or something?!

Instead I get NO referral to a Neuro, NO MRI, NO EEG, NO referral to a psychologist, NO FUCKING NOTHING except Anti-seizure meds thrown at me since Feb last year when my szs returned at the same time as my periods returned after bf DS3...

Suffice to say that my mental state is very fragile tonight. I nearly walked out of the house in my bare feet earlier leaving Ex with the kids, because DS1 started kicking off about FUCK ALL.

I know I'm going to end up saddled with a three grand debt because I haven't got a snowball's chance in hell if proving that I have epilepsy & mobility issues (ignore that for now...) in just 4 ducking bastarding cunting weeks.

Their OWN medical officer decided that I DO have epilepsy (and she was some sort of epilepsy specialist person...) and mobility issues - but that's not good enough, is it.

Argh, I just want to shout that they are all Cunty McCunterson's.

I don't think I'm getting up tomorrow. What's the point. It'll just be more of the same old crap with no help, no support, no nothing.

I can't change GP's until after May either, or it'll put DS3's ADOS back. So I have to wait until DS3 has been assessed.

Tell me about it!

Tbh, I couldn't give two shiny shits if it IS NEAD. And I CAN see why they would come to that conclusion - previous sexual abuse? Check. Previous family dysfunction? Check. Previous guilt-laden bereavement? Check. Previous depression? Check. Family member with epilepsy? Check. (Though I've NEVER seen her have a seizure, I 'know' she has epilepsy and is on Tegretol)

My guess is, after a clear 20 minute EEG 3/4 of a decade ago, on reading my prior history, the easy dx WAS NEAD. Though quite why the very FIRST Neuro I saw declared it to BE epilepsy is then beyond me.

What is ALSO beyond me is why, if my dx was definitely changed in 2008 to NEAD, after no further MRI's or EEG's, neither the GP nor the flashy Neuro from Queen's referred me to a psychotherapist to TREAT the NEAD??!

And tbh, the flashy Neuro only seemed to change the dx from epilepsy to NEAD at the point where he asked me to stay for 3 days and nights, in Romford, 60+ miles away from my home, when my DS2 was only 4.5yo, barely walking & talking due to his SN's, and I was a lone parent with NOBODY to leave my (then) 3 DC's with.

I tried to compromise by asking him to send me home with an ambulatory EEG for a week, going about my usual business, transmitting my brain waves back to them, but nope.

He left me on Gabapentin back then, though I chose to come off it about 4/5 months later because of the side effects & because I basically got depressed after losing Korben and didn't go back to the surgery for a repeat prescription, and also because I felt at the time that if it wasn't epilepsy, then why did I need anti-epilepsy pills?!

I was still having seizures, just not as many. But I didn't have a fourth DC then, who also has additional needs.

Surely if he is of the opinion that it IS NEAD, then both the GP AND the Neuro have been negligent by NOT referring me to a psychotherapist? AND by continuing to prescribe me Gabapentin when my seizures are not epileptic seizures when my seizures got a lot worse?

And how is it that there was a direct correlation between the exact moment my periods restarted after bf DS3 and my seizure frequency increasing hugely?

Surely if there is a hormonal component to it, then it isn't NEAD?

Ex has written an account now. Even HE'S so angry about this!

And what's random is, it's my Paternal Grandmother who has epilepsy. I haven't personally seen her for 13 years, as she lives 650 miles away in the top end of Scotland. We keep in touch very sporadically by letter. About once every couple if years because I'm shit at writing letters.

BUT my Aunt (Dad's sister) on my Dad's side has also been investigated for epilepsy (recently, within the last year), and it has been found to be 'inconclusive'. I haven't personally seen her for...15 years. She lives in Kent, around 130 miles away from me. I only accepted her friend request on fb a year ago, before that we hadn't even spoken on the phone for 10 years...

Four years ago, a cousin on my Dad's side was investigated for epilepsy (my Dad's brother's DD). Again, it was found to be 'inconclusive', and she now has her driving license back.

Six years ago, my DD's Primary school asked me (with no knowledge at the time that I had been dxd with epilepsy - this was before the NEAD thing reared it's head too, mind you) to get DD investigated as THEY believed that she was having absence seizures. DD had a sleep deprived EEG (I posted on here about it under an old name!!) that proved...inconclusive. No further treatment. I still believe that she is having absence seizures, but if I push it, I can just SEE the FII/Munchausen's allegations lit up in lights...

But no, there's NO hereditary factors in Epilepsy. And there's no connection whatsoever, is there?! And of course, my seizures HAVE to be NEAD because of my prior history, don't they...??!!

If I was a cynical person which I am, I might say that it is far easier to palm me off with a 'dx' of NEAD and then do fuck all to help the NEAD than it is to really try to find a cause and treatment for refractory epilepsy...

Especially when my personal circumstances rule out a vEEG.

I was helping my severely dyslexic ex to write a detailed account in his own words (spelling every second word for him) until 1.30am. Then I had to write my own account from my perspective which took me until 3.30am.

I've also written a list of questions for my GP, and have an appointment booked for 10.10am...

I only have five minutes, got to type up the notes I pulled together last night from our threads and emails etc before having a bath and getting ready for my neuro appointment - and I had a shitty night last night. Don't even remember it properly, just that it was very restless, ds1 had a nightmare at 4.30 and I think I had several very woozy sleepy episodes afterwards, but can't think or remember clearly this morning.

Couthy, my thoughts are similar to yours. Either way round, whatever the docs try to come up with as an excuse, they have been negligent. Either you are on Gabapentin because you have epilepsy - so you do have Epilepsy or you have NEAD and they shouldn't have been prescribing drugs for it - you should have been referred for appropriate therapy. Clearly negligent either way.

GP is saying you don't have seizures when you clearly do - whatever the cause. The cause is irrelevant, seizures are seizures, regardless of the cause and from a DLA viewpoint, still affect your life in exactly the same way regardless of the cause.

If GP is saying you aren't having seizures, why up the Gabapentin? The fact that you need a higher dose and he agreed to it, clearly indicates that you are having seizures and they weren't sufficiently controlled at the lower dose and that he was in agreement about this. If they have on record from a consultant that it's NEAD, they shouldn't be prescribing AEDs anyway.

Questions, is the GP going to try and say the Gabapentin is for your joint pain and not the epilepsy? If so, he will have to admit to the mobility problems which he has apparently also denied to the DLA. So he's managed to catch himself out there again.

As far as I can tell the docs don't have a leg to stand on and whether they decide on NEAD or Epilepsy is irrelevant the effect on your life is the same and you therefore have the same needs and are therefore entitled to the DLA you were assessed for. To back this up you have the opinion of the Epilepsy DLA bod who came out to assess you. Whatever happens you definitely shouldn't be losing your DLA.

That said, even with right on your side ATOS is making it almost impossible for most adults to get DLA.

My uncle has emphysema and a crushed spine, he is can just about get around at home, but really should be in a wheelchair as not only is he in major, constant pain, but he can't breathe without oxygen. ATOS called him for a DLA assessment. He told them he couldn't do stairs and would need a wheelchair if it was a long walk. They told him he had to go. He got a taxi, arrive and the office was up three flights of stairs. Stubborn bugger that he is, he tried to climb them with his wife helping and collapsed - at which point the security guard had to call for help and his words were 'this guy is going to die if you don't get some help out here NOW'. He was carried to his assessment in agony and - you guessed it - pronounced fit for work! He is appealing, but honestly he shouldn't have to, anyone can see that he clearly cannot work and on top of the fact that he's severely disabled and in constant pain, he's over 60, so no-one is going to employ him anyway.

My dsis had a nervous breakdown last year. She has been through a lot of therapy, tried a graded return to work - that failed and she ended up having another breakdown. She has constant panic attacks, cannot cope with public transport, but doesn't drive and is too nervous to learn. Her psych says she is improving very slowly, but definitely in no state to work and informed the DLA people thus. GP disagreed, said she was fit for work and told DLA this. She told them ATOS people that she couldn't get there in the rush hour because of her issues with public transport and crowded places, they said she had to come to the appointment she was give or lose her benefits and gave her a 9.00 am appointment on the opposite side of London to where she lives. She forced herself to go, left home at 6.30 to avoid the rush hour and took her partner with her for support. The transport was packed even at that time and she was in a terrible state, she broke down in the assessment and was apparently in a real sate. They stopped all her benefits and she is living off her dwindling savings. She has saved for over ten years for a deposit on a house, whilst working in a charity supporting trafficked women and their children (hence the breakdown). Charity treated her like shit and dumped her when she couldn't cope anymore (they have form for this). If she hadn't got those savings she wouldn't have survived this long and her psychological state has been knocked right back by losing her income, then her benefits and not being able to work. She desperately wants to work, she is a hard worker and wants to work helping people - but she can't. Since they removed her benefits, she has applied for hundreds of jobs, but hasn't had a single bite - ffs, who is going to employ her? She can't even get voluntary work.

They are bastards.

I think you need a professional advocate on your side to give you the best chance of winning with this. I saw these people recommended on a disability charity website.

I would also advice contacting some of the disability charities to see if they can offer you any advice/support/advocacy.

Haven't had time to look - but came across a link to [http://www.afteratos.com/ this blog]] as well.

I have to go now, but hope you manage to make some headway today.

Before I go - just had a thought - if GP no good, ask to meet with Practice Manager - they will get very twitchy if they think GP has been prescribing unnecessarily or hasn't referred for treatment when they clearly should have done as it leads the clinic wide open for a negligence case.

GP started prescribing the Gabapentin in February/March last year. (After the break)

My joint pains didn't even START till the end of August, and I didn't go to the GP about it until AT LEAST October.

By which point I had been back on the Gabapentin for at least 6 months...

Bloody MN eating my posts. I'm going to ask about that in site stuff, then I'll update (again) properly.

It will be long...

I'll start from the start, and add my whole bloody saga from start to finish.

Age 14, dxd with depression after attempting suicide, had inpatient 'treatment' which involved counsellor 'listening' to me witter on about things to do with my childhood (shit childhood, went right off the rails at 15, got myself together age 22, with 3 DC's in tow...

9 years ago, had a huge seizure just 2 weeks after the birth of DS2. Wet myself, shaking, the whole shebang apparently. Got taken into hospital etc, was fine, sent home.

GP referred me to local Neuro number 1. Who dxd me with epilepsy as I'd had numerous seizures since that big one. Never referred me for the MRI he said he would.

GP later got struck off for a) feeling up female patients, and b) not sending in referrals... (It's all in public record, Dr. Chyc if you feel like Googling...)

Once Dr. Chyc had been suspended, I saw another GP at that practice (not my current one, I've moved since then.) She sent me for the MRI, after a year. No results were ever chased up for that. So never got the results of my first MRI.

I'd been put on Lamotrigine by that first Neuro, but it did NOTHING to stop my seizures, even at a quite large dose.

So then I moved house, area & GP surgery to where I currently am. New GP was confused to find no record in my medical notes about the results of the MRI I was adamant I'd had, and was perplexed by the fact that after 11 months of having seizures, I hadn't been sent to have an EEG.

So he sent me to a Neuro. When I got the appointment letter, the appointment was at the local Private hospital. This confused ME, so I did a bit of Internet 'digging'.

(The first time I'd ever done so...started something that did!)

I was VERY concerned by what I had found out.

My PCT had not had a Neuro for 18 months. Not ONE. Because their Neuro had been SACKED by the hospital for something to do with his awful bedside manner. (Never did find out the full story...)

The 'Neuro' that I had originally seen, that had dxd me with epilepsy, was a UROLOGIST with a 'special interest' in Neurology.

Now, back to my appointment at the Private Hospital. It turns out that the Urologist was no longer doing Neuro appointments for the PCT, so as they were still without a Neuro, they were sending patients to see the Neuro that was working at the local Private hospital.

Who just happens to be the self same Neuro that had been SACKED from the NHS hospital.

Needing answers, and giving the benefit of the doubt, me and Ex (by this time back together for a bit...) went to the appointment.

Our taxi was an HOUR late, so we ended up being around 25 mins late for the appointment. Well, apparently, you don't keep this Neuro waiting. I had to beg, literally, in tears, to be seen. He did deign to see me - but not until the end of his clinic over an hour later.

Cant say much as on dhs phone. appointment a disaster. ambulatory eeg ordered stress mentioned basically he thinks its psychological.

Will post again when I get home. and

As soon as we got into his office, he turned to us, and said, in a very superior manner, that "I've read your medical history, it's obviously NEAD, you are doing this all yourself, just stop it and leave me to the patients that can't stop themselves from having seizures."

I tried to explain my symptoms, and he spoke over my head, was downright rude, and then turned to me and said "well, if you hadn't had 3 children with three different men, then you wouldn't have this problem"

At this point, I dissolved into tears, trying to work out how my sexual history had anything to do with me having seizures. My Ex, a very placid person, had to be held back by me because he was going to hit him! (Not something I've ever seen my Ex do, before or since, in 14 years of knowing him...)

So we left.

He did refer me for an EEG and an MRI.

GP decides that Lamotrigine is not suitable, as it was having no effect. He put me on Epilim. That was very short lived, as I was allergic to it - to the point where I needed a steroid injection to stop the reaction.

So GP then put me on Tegretol. That was OK for a few months, but then I started to develop mild jaundice. GP decided (without blood tests) to take me off Tegretol, because he believed it was starting to adversely affect my liver.

So then the GP wanted to send me to a Neuro. The only one available was the bastard at the Private hospital.

No FUCKING WAY was I seeing that Neuro again. I'd have rather eaten my own brain.

So I did choose and book, and found out that Queen's hospital was meant to be a 'centre of excellence' for epilepsy. OK, Queens is 60+ miles away for where I live in N. Essex, but it was worth it to avoid that horrid wanker.

not you too. WTF is it with this?