Moose here, Not SEN children but could someone please advise me - epilepsy

[moosemama]

Well my weekend away was disastrous in many ways, but the most significant one was spending the whole of today in the Acute Medical Ward of the hospital after having what is believed to be two fits last night. (Meanwhile my poor old Mum was coping dd recovering from a vomiting bug and ds2 coming down with dd's bug really badly and even throwing up in his sleep over and over - so she had to sit up all night with the poor mite. )

As for the weekend away, I didn't even make it to the meal. 6.30 pm, ordered my meal, felt a bit odd, realised it was neurological and dh took me back to our room - which was in the building next door. Went to bed and after a while felt well enough to think I was just going to sleep and would probably feel better later and perhaps join the guys for a drink before the end of the night. So sent dh back to join our friends.

Woke up an hour later felt odd and disorientated. Went to the bathroom, sat on the loo, felt odd and then woke up under the toilet, head and feet the wrong way to have just fallen off/fainted. When I came round I was aware of a sort of growling noise, and then a pain in my head. I realised when I came out of it that the pain was my head repeatedly bashing the underside of the wall hung toilet bowl.

Lay there for a few minutes until I felt I could move, got up wobbly and sat on the loo, then wham - woke up under the sink on the other side of the room - it was a really big bathroom, so again too far away to have just fallen.

There was no warning, although I did feel really strange. No dizziness and I didn't feel link I was fainting - which has happened to me a lot over the years and I would recognise that "uh-oh, here I go, slidey feeling". It was literally just, one minute I was sitting on the loo, the next I was under it with a head covered in lumps - the worst one being my left eye socket. Fortunately it didn't develop into a full on black-eye, just a shadowy bruise that can be mistaken for a shadow - can't imagine having to walk into school tomorrow with a black-eye.

I also ache all over today and seem to have wrenched my shoulder - although I can't imagine how.

So there I was, locked into our suite on my own feeling very scared and shaky, with dh at a gig in a separate building. Managed to crawl back to the bedroom and grab my phone and by a miracle got pretty much the only decent mobile signal I had all day to send a text that read He L p.

Dh is now back in my good books after coming thundering through the pouring shropshire rain and up three flights of stairs to rescue me. He had been drinking so couldn't drive (not that we knew where the hospital was) and all I wanted to do was sleep and wouldn't let him call an ambulance, so he insisted on checking my pupil reflexes for concussion, before sitting with me until I fell asleep.

Sooo, my question is can you be aware you are having or rather coming out of a fit, or would you be completely oblivious to it? I have always thought you have absolutely no idea what's going on and because I was on my own, no-one else saw what happened.

The doctor I eventually saw at the hospital felt it was suspicious enough for them to want to keep me in and run some tests tomorrow, but I refused as ds1 was already in a state, having expected us back at 4 pm and Mum wanted him to sleep over there, which would have screwed the whole week up for him due to the routine change.

Most of the standard neuro proddy pokey tests they did today were normal, but I had a positive Babinski's reflex in my left foot (the one with Complex Regional Pain) and I have felt like I have a really bad hangover all day - which is rather unfair considering I didn't get a chance to drink. In the end they agreed to discharge with an urgent referral for outpatient EEG and yet another MRI, plus a letter informing my neurologist.

I really want to believe I just fainted, but know it didn't feel like that and I to be honest I get upset and frightened just thinking about how it felt at the time. My friends want to rebook in January for a 40th birthday, but I can't bear the thought of going back there.

Yep, spot on. Not my dept, shuffle papers. Not my dept, shuffle papers, needs to go back to person 1, shuffle papers. And the cycle starts again.

And meanwhile, things get worse and worse and still no official diagnosis.

I'm booking double appointments in the New Year for me, then one for DS2, then one for DS3. I WANT BLOODY ANSWERS AND OFFICIAL DIAGNOSES FFS.

And don't get me started on MRI's - my first one was deemed 'urgent', took 4 months to come through. Everything looked 'normal', but dxd epilepsy.

Cue 4 years later, seizures worsening, sent for new MRI to compare results to make sure no obvious deterioration...and after the MRI they admit they can't do a comparison because they have list the friffing first one!

Aaaaaaarrrrrrrrggghhhhhhh!

I haven't been 'allowed' to have one since, either, so another 5 years down the line, with symptoms worsening again, when I stamp my feet after Christmas and insist on a new one, they will probably have misplaced those films too!

Inept, and the phrase "not knowing their arse from their elbow" springs to mind...

My wrists dislocate at least 20 times a day, I am so used to it that I pop them back in without thinking about it.

I have at least one finger dislocation a day, sometimes 10+.

And as for my neck - it dislocates so loudly that other people comment on it. It really is that loud (and painful).

But we don't have EDS...

This is despite 6/7 in the last three generations in our family having diagnosed Hypermobility syndrome, at the more severe end of the scale, with probable vascular and neurological involvement too.

But it's not EDS...

Couthy, I was told they have a policy of burning MRI's after 5 years so no comparison could be made. Then suddenly two appointments and one year later they suddenly had a copy to compare.

Sounds like we are all similar on the EDS front. I don't think I have any joints that don't sublux - oh wait, yes there is my elbows. I don't have significantly bendy elbows - but that's it everything else either bends too far or has seized up from bending too far and shifting about for too many years. I wake in the night regularly to pop my shoulder and neck back in and when I was a teenager, just about to take my A Levels, I dislocated my neck so badly that those little sticky out bits of bones crossed over each other and got stuck. I had my head stuck in one position for over a month and was off college, when I should have been revising. No treatment, no referral, nothing - apparently because 'no-one will do anything with necks, as it's too dangerous with the spinal cord etc'.

I was under paeds as a child because of problems with hips, knees and ankles - they even booked me in for an operation but I chickened out and told them it didn't hurt anymore because I was terrified - and they discharged me as a result! My knees used to lock up several times a day and I would be in agony and have to punch them repeatedly to release them.

Now no doc I speak to can be arsed to look back at my records to find out what it was all about, I was too young to understand and my Mum can't remember - but then they didn't tell parents anything in those days anyway.

... and what did ds's paed put on his report - despite receiving a 6 page family history clearly indicating EDS going back four generations on my Mum's side? "Mum and Grandma have some joint issues, but these are not a problem and have improved as they grew up". Er ... no, they worsened and as a result my mum has had one hip and knee replaced and needs the others doing, but still suffers pain in both joints because the ligaments don't hold the new ones in place properly. The physio I saw about my CRPS said she'd never seen such hypermobile feet and ankles, same with the hypotonia on both feet.

I have to admit, I have just stopped fighting re the EDS, as the whole of the NHS seem in denial about it and Prof G is pretty much a lone voice that we can't afford to see.

I raised the question of whether the vascular lesions on my brain might have been caused by EDS at my last neuro appointment and to be fair she was interested - for a minute - but then insisted it couldn't be because I tested negative for lupus! She seemed to think something would have shown up in my bloodwork - again no point in pursuing it as she clearly knows naff all about it and wasn't interested in asking anyone who does know.

That's what I thought - but seeing as they mysteriously turned up at a later appointment without so much as a word, I just have to assume my neuro isn't terribly good at telling fibs!

I am silly, I really am. Just sat down for a quick coffee before the school run and started watching Lassie Come Home. Floods of tears! Honestly I have been welling up over practically nothing this week, so couldn't have picked a worse film to watch really. Doh!

Do they give you copies if you ask then Leonie? I always assumed they'd just tell me no. I know I have a right to request a copy of my notes - it's on the list with various FOI requests, but wasn't sure about test results etc, as they happen, iyswim.

I think that's part of the problem with the NHS to be honest - they make you feel that they own your health records and after a lifetime of being treated like that you have a tendency not to even question it anymore.

I think it's about time I starting questioning lots of things.

That's what I was thinking, that in the US you are in charge and obviously paying their salary, so there is a completely different relationship from the off.

Of course we also pay for the NHS, but we are made to feel like we should be so grateful for any crumb of care they throw our way that it tends to become ingrained in us over time ... until we wise up and stop taking it.

I remember being appalled when a consultant's secretary told me to phone up repeatedly and write a letter asking about my place on a waiting list, as that's the way people get moved up the list! It really is a case of 'he who shouts loudest' - as you have just seen perfectly demonstrated by your referral debacle. The other two referral letters are probably making their way through the antiquated NHS snail mail system and will arrive mid-January. That's why everything moves so slowly in the NHS.

My mum used to work for the NHS and often tells me that's exactly what the problem is - everything is done by snail mail. It takes a day or so for the doctor to get around to dictating the letter, then it get's typed, then it goes back to them for checking, then back for amendments, then it goes into the internal mail for processing to be posted externally - then it gets posted - often second class. It's just as slow for incoming mail, because it has to make it through stupid levels of admin before it reaches it's destination. It's a dinosaur and costs the country multi-millions every year. Why they can't just use email is beyond me - I can't believe they are still putting fax numbers on everything - who uses faxes these days?

But why didn't she email them a copy? It's not rocket science, how can they not see they are operating in the dark ages fgs. Urgh!

Carrier pigeon is all the NHS will stretch to...

Friends husband saw these guys for possible EDS after local genetic team diagnosed "something-weird that's like marfans but isn't marfans". And was told he might be seeing Professor Mathias next, if other clinic says he has "something-weird that's not eds either"

NHS IT scandal explains the snail mail

Maria, they will only see people who are suspected of being complex, so having a crossover of two or more types or one of the types other than type 3 (Hypermobility Type) and getting anyone to agree to that enough to refer you is nigh on impossible unless you have very obvious symptoms.

Second link looks interesting, as it's hard to find anyone other than Prof G who is interested in autonomic dysfunction - again though, event though we are supposedly allowed to choose any hospital in the country for a referral, it's practically impossible to get an out of trust referral without a huge fight.

ah, df husband sounds genetically complex, so that explains it. Had a quick look at the second link's hospital website and they seem to be big on getting all their clinics uploaded to the national choose and book system. Presumably it's how they safeguard their institutional income by making it easy for your GP to refer in a few clicks before they fall prey to the local attempts at rationing ... perhaps get a referral in now before the axe falls

They do sound a bit like myo seizures, but most of the time myo's only affect one side of your body at a time. So a bit for me too, on this one. Though it DOES sound exactly like I get in my thumbs, and my eyelids, and the side of my face with my myoclonic seizures. It's all on the right side of my body - except the eye ones, which randomly are always on the left.

I would write it down - and maybe ask for a sleep study, with a view to catching one on film?

Thing is, our cases of 'Hypermobility' (EDS) ARE complex. We have muscular, vascular, AND neurological symptoms. Still haven't managed to get the referral though.

I'm going to be bugging the GP under choose and book in the New Year...

In that case Couthy push for a referral to Sheffield, as they are the centre of excellence for dx complex cases.

I have no idea how much of my general health crappiness is down to the EDS, but I have my suspicions. I suffer from autonomic dysfunction (POTS) although again undxd and autonomic dysfunction is involved in CRPS. I have multiple vascular type brain lesions and lots of cognitive, neurological and more recently fine motor problems - but the neuro, although agreeing it was an interesting question, said the lesions can't be EDS related because nothing showed up in my bloodwork - which is a nonsense, because you can't dx EDS via bloods. Then again, CRPS is related to autoimmune problems as well and a lot of autoimmune disorders would also explain many of my symptoms.

To be honest, I don't think anyone will ever be able to untangle it all, even if I really fought to be fully and properly investigated. Not least of all because in the NHS, each consultant would only look at their particular area of interest and not be interested enough in the overlap or knock-on effects of each problem to identify the underlying cause.

I know I said I would be going to the GP in the new year, but with the fight we have on our hands to get ds1 placed in the right secondary, realistically, I am not going to have the time or energy for anymore fighting until we have a cast iron school place offer and the deal is done. LEA are supposed to let us know the second week in Feb, so it will be at least the third before we receive the letter and then in all probability we will be off to one of the rushed secondary admissions SENDIST tribunals.

I am not good today at all. Still in my pjs under a blanket on the sofa. Boys have been a nightmare and I have banished them to their bedroom for the rest of the afternoon. Seriously considering sending their presents to charity. Any Christmas spirit I had yesterday from my lovely Secret Santa delivery has well and truly disappeared this morning.