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.

Blimey Leonie, it beggars belief the lack of knowledge schools have about this stuff.

We are in the same boat again then - no named school!

Right, well am back from GP obviously and he was lovely, bless him. I knew he would be. The first appointment they offered me was with a Dr I wouldn't give the time of day to, so I jumped when they said this appointment was with him - he's really good solid senior GP, with years and years of experience and head of practice as well. He's a straight talker, tells it like it is and I used to be terrified of him. These days I wouldn't see anyone else and never take my dcs to any of the other doctors in the practice if I can help it.

He was really cross that neurology gave me the brush off and wouldn't discuss my results with me and horrified they told me to go the AMU for them. He asked me to talk through what happened and said he felt it was pretty clear cut that I've had two tonic clonics in quick succession. He was pretty peed of that my neuro is off on a career break and not happy for me to see a locum, so said he wanted to re-refer me - but to my neuro's boss, who he says he knows personally and is an excellent doctor. I said I felt there was no point, as the tests keep throwing up nothing and I feel like I'm wasting everyone's time. He was insistent that I am not wasting anyone's time and mustn't feel like that and that he felt a referral was absolutely necessary.

He then told me what the results from the AMU said and asked if I'd like a copy!

So:

EEG - within normal limits. (As I expected)

MRI:

"Multiple focal signal changes in the deep white matter of both cerebral hemispheres and in the subcortical regions. Not significantly changed compared with the previous scan of (1 year earlier). These are of non specific appearance and may be due to a small vessel ischemia, rather than demyelination - among other causes. No other definite intercranial abnormality."

So there you have it - an 'ead full of 'oles, but they don't know why.

Discussed with the GP the fact that the 2 mri's aren't comparable, having been done on two entirely different MRI machines with completely different protocol and T weighting. Also had a nice chat about how we are both mega-claustrophobic and hate MRIs.

He said that just made him even more sure a referral was necessary.

Oh and he apologised for me not hearing re my physio appointment. Offered to put my private CRPS dx on the NHS system and said he'd chase up my errant NHS appointment for me.

I have been thinking. Basically, these MRI results are all saying, well there's lots of stuff there, but it's all a bit fuzzy and unclear, so we don't know what it is - could be anything really. If they feel it's most likely ischemic, then surely they should have done and enhanced MRI to trace blood vessels. I have never even been offered it. Also if I have small vessel ischemia, I should have had my heart, kidneys and cholesterol checked and been given advice about preventing strokes. Instead they've just not bothered. I was told years ago, when I had complex migraines that I was a high risk for stroke and should therefore never have any form of hrt or take the pill for contraceptive, but since this round of investigations, nothing.

Dh has a video of me having what looks just like a TIA (one of several over a few months) which is what prompted my GP to refer me back to neurology in the summer of 2011, yet they jumped straight to MS, based on my history of relapsing, remitting/episodic health problems and then when it wasn't that, didn't look any further and said - call it ME if you like, but we don't believe in it.

AMU discharge notes are riddled with errors, state my neuro exam was normal - it wasn't - and that I am under neuro because I have some tingling in my left hand.

Cross posted whilst typing my mega post.

Leonie bless you.

Not near Midlands, unfortunately. Am in the black hole they call Essex.

And at 'a lot on my plate' not covering it!

I forgot about my GP appt for my joints, and DS2's appointment for his asthma check tonight, until it was too late.

It's the second week in a tow that I have forgotten an appointment with this GP for my joints. The surgery must hate me!

But this GP is only there on a Friday afternoon, from 4pm, which is just about the worst time in the entire week for me to remember appointments.

The other GP's don't 'do' joint problems or asthma checks, it's just this one GP.

One week I might actually REMEMBER the friffing appointments!!

No, it's not the same guy. It's this guy. Odd how both my neuros have been Italian!

Dh and the dog have just left for the vets - what a day!

I'm not sure. Your guy sounds like he's more up to speed with new research and actually actively researches himself, which should mean he doesn't make assumptions - unlike certain registrars we could mention.

Well our day just got even worse. Best friend called to say his Dad has had a stroke and fall and he has to rush down to Hertfordshire so he's not coming for dh's birthday as planned.

Vet said it's doesn't look good for our old girl. She has antibiotics for her ears - which is par for the course with her, as she is seriously atopic and has chronic mallassezia pachydermitis and has had her glands emptied, so hopefully she will at least be more comfortable now. They also took bloods to look for cancer markers, results on Monday and she then has a fine needle biopsy the following Monday. To be honest, we know in our hearts it's cancer and we don't want to put her through aggressive treatment, we just want her comfortable and happy for as long as possible. She's getting on for 14 years old and was still acting like a pup up until about a couple of months ago. She's never been the healthiest specimen, having come to us as an urgent rescue - rescued at 4 weeks when she already had a tail that was broken in two places and double inner ear infections - she came to us at 6 weeks old. Just a big fat bundle of fur with big brown eyes and a wicked sense of humour!

Do you know, I don't know of a single dog that's passed on and hasn't had cancer over the past few years. Theory is it's ground level pollution that does it, because obviously they are low to the ground and always snuffling about at something or other.

Thanks Leonie, she's been an awesome friend. Probably the nuttiest dog I've ever owned, but so full of fun - simulatneously annoying and lovable.

She's sitting on my good foot at the moment, recovering from the indignity of the vets.

Moose glad that you have a sensible GP.
Can't understand why they didn't follow up clear problems on your MRI.
I can understand why they send me away when the tests were clear (though that does not mean, patronising registrar, that I am 'not disabled by them'). But still to do that when there is a visible problem beggars belief.

All I can find out about their scanners is this article which is all over the web and dates back to 2010.

Heartlands MRI info

The open scanner is 0.6T, all their others are 1.5.

It's not going to be easy getting a 3T and from what I've read they're still not sure it's as safe as lower T scanning. The jury is pretty much out on it at the moment.

I've also read that it's the software and protocol, rather than the strength, that's the most important thing. A 3T scan is only as good as the software and protocol being used and apparently in some of the private clinics the software often lets the process down.

I think 1.5 is as good as you're going to get on the NHS and the only 3Ts I've seen are all London based.

I still haven't had a decent night's sleep - dog had us both up in the night again and dh has been working all day today, so I've been on my own with the small people. Am not feeling good at all.

When I went in they were very careful to make sure my neck was supported and comfortable - just tell them what's what and they should be able to do something for you.

I have been doing a bit of research re my MRI results and medical history and I think I may actually have the answer. Worse, I think my neuro already suspected, but was 'watching and waiting' hence the repeat MRI 2 years after the first.

I think it could be CADASIL. It fits from the complex migraine, to the episodes of encephalopathy and episodes of coma-like drowsiness and confusion and ultimately the seizure and my MRI lesion pattern. It's genetic, autosomnal, so 50/50 chance of the dcs having it - but my Dad suffered from near identical migraine episodes to me, right down to being in bed for days afterwards basically off his head with confusion and decreased consciousness - so it could well have come from him. He did relatively young from aggressive prostate cancer though and had multiple brain secondaries, so difficult to untangle what was going on for him to know if he was having TIAs or even poss a stroke.

I am definitely going to put it to the new neuro - it fits too well not to follow it up and they can confirm it via genetic skin biopsy.

It ain't pretty I'm afraid - prognosis is er, well, depressing to say the least.

I'm not going to get hung up on it though. Will make a few notes and put it to the back of my mind until I see the neuro. At least with it being genetic, I can get a definitive yes or no, providing I they agree to the test.