Hello. Found Neurotalk whilst googling for anything could help me. Right now, after several years of problems getting nowhere, sheer and utter frustration ... it's made me seriously depressed, along with other major problems in my life and ... got down so very badly with it I don't want to be around anymore. It seems no one medically will help or seems to want to know.

I apologise for the long post in advance but I have been in hospital this week ... and will get onto that later on so you can get a better picture of why I am feeling so down right now.

Starting off I'll give a short timeline until now of my problems:

1) Suffered what several people have told me is amauris fugax. One was a qualified optician, and another a good friend who is medically trained, very well clued up on such things. One evening December 2004, suddenly lost vision in one eye. Left eye was obscured by a yellowy, bright and mishapen 'ring'. Couldn't see through the middle of it, only round the sides of my vision. Then started to feel very unwell, dizzy/lightheaded. Very unusual had never had it before. Lasted for around an hour. Then started to fade very slowly.

2) Visited doctor following week. Examined my eyes could see nothing wrong but admitted he wasn't an opthalmologist so may be missing something. Saw an optician for an eye test. Straight off she disagreed with the doctor's findings, sidetracked my doctor and went straight for a opthalmologist referall urgently and 'ASAP'. Optician didn't have the equipment the opthal had access to so was unable to see properly the back of my eyes. But she did find a ring of white cholestrol around the left eye. White ring. But this usually common in much older people. Mmm, I thought, what could be causing that?

3) Soon after saw eye clinic. Their findings were I needed an urgent CT scan ASAP because I had optic swelling to the back of my eyes ie papalodema I learned later from a medically trained friend. CT then changed to MRI suddenly and without my knowing.

4) Had MRI for suspected brain tumour. Cerebral ischemic matter was found but ... this only decided upon as they couldn't decide what the tiny pinpricks they could see were. So not a brain tumour but something else less obvious. Went back to my doctor expecting to be referred - again my friend said I'd probably get a referall to at least a neurologist - and zip. Nothing happened. No follow ups. Left in a frustrating void for months, wanting answers to this. What caused it being the most basic one.

5) Months later 2005 I started having severe attacks of dizzyness, loss of coordination, problems with short term memory, lightheadedness, loss of sensation at times, numbness ... by early 2006 these had become so frequent, so severe I almost collapsed and blacked out on at least 2 ocassions. It was getting scary to say the least. Went to my doctor, he couldn't find any explanation ... again no referall to someone who could or any offered. It wasn't until I had two very SERIOUS attacks like this after 4 in 2 weeks he did anything. One was nearly collapsing late at night after going to a supermarket, and felt like the prelude to black out ie lights in eyes, dizzy etc and low breathing. The other was when I had a severe one, fell off a swivel chair at my PC, almost was unconscious *may have been actually cos next thing I knew chair was on top of my head* and ended up badly bruised, falling backwards against a hard object. Obviously something was going on.

6) Went to my doctor explained all the different symptoms I'd had for months . Which had worsened. Now it's important to mention here no time did I have a headache. Just the other symptoms. Doctor didn't really know so eventually fixed on a diagnosis of 'classic migraine' which was the closest he could think of. Okay, I thought but was still unsure. Something just felt 'wrong' and that 'wasn't it' entirely.

7) After this, found out I was due an annual eye test *which I was never told about or anyone told me about anyway* which was brought forward because of the above. Again, referred for MRI as swelling hadn't reduced but increased. Same findings as before one year previously. Again, no referall, nothing. No further investigations. Had trouble with my vision by then, diagonal blackness right corner of left eye when closed. Saw different colours at times, most prominent was a pink hue to everything I looked at at times. So everything looked 'bleached' out.

Again, I apologise as this is going to get long winded but it's got like this because how I feel, how frustrated things are getting ... get on to my hospital visit this week so you can further see my problems leading on from the above.

Appreciate everything will appear jumbled but I have problems keeping it all coherently in one timeline. This is something only started happening from the eyesight problem onwards. Got worse, trouble remembering things, putting them down, can't concentrate enough to. Like my mind won't let me.

Anyway here goes:

Firstly, to explain I have never been in hospital before. Not for anything. Except overnight sleep tests at 2 different hospitals. And even when something is wrong I keep it to myself ... and don't want to bother anyone. Just the way things have been for me in my life ... because sometimes I feel I am getting somewhere, then don't ... so you give up getting nowhere.

Right. Why I am puzzled here is because of this. Earlier this week, I had a severe headache suddent onset, which was all over my head. It was extremely painful but, because I have had a history of *which I'll get onto later* 'classic migraine (but I rarely, and I MEAN rarely here* get the headaches just the rest including mild to severe aura stages causing different sensations in my body and feeling very ill until they pass off. However, I've not had any of those severe ones for well over a year. If I do get headaches it's usually the 'ice pick' ones or very dull and they come/go within seconds. Only a couple of times have I had them more than a few hours but without the other symptoms.

Then, as on previous *seemingly* migraine attacks, I felt my right arm going numb, losing sensation and 'as it was wan't there' over a few minutes. Sure, I knew my arm was attached, I just couldn't feel it. Was watching TV very late and just thought it was another migraine as before. Until I tried to get up my stairs to go to bed that is. Reached the bottom of the stairs, felt a little strange. My legs just stopped working which has never happened before. Literally, I couldn't get them to move. They wouldn't work. Obviously, this wasn't right. Anyway, as my bed was upstairs and wanted to go to bed, thinking it was another migraine etc etc as had so many before, apart from my legs not working suddenly like that, seemed to be just another aura stage. The symptoms vary and I never or usually don't get the same twice. What I had to do was get on my hands/knees, crawl up my stairs. No power was in my legs, they just wouldn't do what they normally do ie walk. Nothing. No co-ordination. Zip. Got up top of the stairs, got up by holding wall opposite, part of door frame. Soon as I did, fell sideways no warning. And felt like I was on a ship on rough seas. Suffice to say felt very unsteady. Unbalancing. Felt very weak. Then went to bed as done in the past when had bad attacks. Headache lasted for over an hour by this time. Same strength. Didn't diminish. Felt like an awful lot of pressure inside it. Woke up, didn't feel too bad even though whatever had happened had rattled me a little.

Never crossed my mind to phone anyone but was thinkig about trying to get into my doctor's same day as clearly something wasn't right. It's important to mention here that never, ever in my life have I ever gone to a doctor's unless it's pretty obvious I am ill or something has happened like this.

Before I continue I will explain about the migraines I mentioned earlier. In 2005, following a severe visual attack, accompanied by really bad lightheadedness eg for around an hour all I could see in one eye was a bright ring of light, felt very unwell. This happened suddenly, no warning. It was like someone had come along and stuck something over my eye. Obscuring my vision. Can't remember events next as 3 years ago so will give the bare bones:

Had an eyetest - can't remember how that came about - with an optician. She referred me to an eye specialist after she saw something at the back of my eyes and one eye particularly had, I think, signs of cholestrol. Think they said it was this that had caused the wierd visual problem. There was a more technical name for it which I cannot remember and the optician explained it was something usually found in older people. Which I'm not. May have been plaque, not sure.

Within a few weeks, after the optician told my doctor what SHE had found - because my doctor examined me, said he could see nothing in my eyes - because it was of concern. And told my doctor to get me seen by an eye specialist. Got that done. Went through all the tests, various devices. Quickly became clear that the assistant giving me the eye test was very concerned with what she was seeing. And had to refer to the main specialist. I had to remain there whilst she did. Getting really worried, I was then told I'd need an urgent CT scan because they'd found swelling to my optic nerves. Whilst they never said what the scan was for I'd worked out it was for a brain tumour cos was a brain scan.

Don't know what happened next, but this was suddenly changed from CT to MRI and I had it within 2 weeks of seeing the eye clinic. No space occupying lesion but ... this surprised me even more, ischaemic matter was found in small pinpricks in *I think* the left temporal lobe. And that's where it was left. Nothing else came afterwards. I had no follow ups or referalls to find out how/why it had got there.

One year later, following some unusual episodes which were getting worse where I'd have odd symptoms, sensations, confusion for a short time, memory affected, disorientation ... went back to my doctor and it seemed I was due for another eye test to see if they swelling had lessened. Didn't even know I was having another checkup. Following the results of the first MRI there was complete silence from anyone.

Had another eye clinic visit. Same thing came back except the swelling had increased. Puzzling. Again, had referral to MRI but not as urgent. Result came back about 1 month later, same thing found as year previously. Again, left in the dark, no follow ups. Nothing. No one explained to me what any of this meant and I really felt frustrated not knowing. And still don't know now 3 years later.

This brings me to the next thing which happened just before the 2nd MRI and WHY I went back to the doctor, got another eye clinic appointment a few months earlier than it should have been done. I'd had a few attacks previously then they got worse. I had several attacks where my vision would go like when you are going to faint, I'd feel weak, like was going to collapse. I had around 4 in one month. My breathing would get affected and in one instance I fell from a chair badly, ending up with it on top of me, very bruised ... as I almost blacked out, next was on the floor. My thoughts were muddled, very confused, couldn't remember where I was at times. They lasted around 10 minutes like this, then went and I was fine again.

My doctor was very puzzled with all this, as was I. He eventually gave me a diagnosis of classic migraine because all the symptoms were fitting that diagnosis. Now, I always thought migraine was 'just a headache'. And I actually told him that. As some of you may know it's a 'complex cerebrovascular event' where the flow of blood get interrupted, causing these symptoms then usually goes. In my case I wasn't getting the headaches, just everything else instead.

Okay, I thought. Some answers but not what I'd expected. 'A headache?' I just thought. Then the internet became invaluable and my eyes were opened to what migraine actually was. Everything seemed to fit and I was given medication to try out as preventative treatment. Because mine was very bad with what was happening I needed to have regular medication to decrease the likelihood of more aura stages. Tried out a few tablets - one, unfortunately made me feel very psychotic, so I stopped with those straight away - and none of them seemed to work. Was still getting the what I was told were 'aura stages'.

Few months later one afternoon. I felt one coming on, whilst sitting down at my computer. Doing normal things, nothing strenuous. This one felt slightly different, though and my left leg went numb. Very rapidly. But not my right leg. I got up to shake it off, it stayed like that for a few minutes, very numb then blood started to return and it felt rubbery when I poot my foot down. Then I started getting very muddled, very unwell, very confused and I couldn't remember where I was even though I was in my flat. This lasted a few minutes, no headache. Felt very shaky. Lightheaded. Eventually I phoned NHS Direct. Explained to them what had happened. They got a paramedic to visit me. They found some things which caused them concern and I went to a local hospital which doesn't have an A & E department and, I think, is known as a 'cottage hospital'. It only deals with mostly elderly care, non urgent so not set up for it. Ironically, it was here I had my eye clinic tests weeks before this. So same place I went to.

Saw a doctor, didn't really get his name, and I was told in no uncertain terms to go and tell my doctor that I was't suffereng with classic migraine as this wasn't fitting that diagnosis and was completely different. A TIA was mentioned. Finding it difficult to go back and do this, as it was quite daunting a thing to tell a doctor. I did anyway, the following week. Whilst my doctor was slightly put out as it was clear he didn't like the other doctor essentially telling him his diagnosis was wrong - a diagnosis which was only concluded because he was 'puzzled' with everything I was describing but had been going on for months, never happened before in my life and he then said he didn't agree it was a TIA I'd had because the symptoms didn't fit. But, hang on, the doctor I saw at the hospital said the same but opposite to that. He was a bit unwilling but I was then referred to a TIA/stroke clinic. Which was also I think what the doctor I'd seen suggested I'd need doing.

Saw TIA stroke clinic. The attacks I'd had did start to lessen but still kept having them. None like the suspected TIA, though. Consultant gave me thorough examination in the very limited - there was dozens of people outside mostly elderly and I felt out of place being the only young person in there if you know what I mean? - time we had. He did find some weakness down one side but wasn't concerned by this. I'd have another appointment with him later 06 as he wanted to keep any eye on me and check my progress. Well, okay, but he wouldn't be wasting NHS time by seeing me again if nothing was wrong? Or you'd assume so. Anyway, I felt happy I'd at least seemed to be getting to the bottom of things finally. 2 years left in a void with no explanations from the first MRI to that point.

I then had a very serious problem develop in my life, tipping it disastrously on it's head. I left the area I lived in. Didn't go to the follow up as it all happened same time as this problem. Had to cancel cos I'd left the area and was living different part of the country by then.

Sorry for the long post. Which brings me back up to date. I now live more or less in the same area as I did before again. But as I was hoping to try and move back nearer to my old surgery I'd held off as long as I could registering locally. Anyway, earlier this year I had really bad pains in all my joints which I'd never had before. They were really excessive, could hardly move at times. So I had no choice but to in order to get medical help with this new problem.

2 months later, I've been diagnosed with pre diabetes but also fatty liver, enlarged spleen. And, because I vanished off the medical rader so to speak almost 2 years ago now, everything I'd had in place at the time ... I lost contact with everyone it all happened so suddenly. So, I've only just reappeared medically speaking.

Had so many blood tests it was my 21 needle in hospital this week. Not until recently have I started having what I've always been told were aura stage attacks. So, even though they get very severe I usually have to lie down then they go minutes or a few hours later then I can walk around again without problems, don't feel unwell I've ignored those but only because I was told they were migraine related. So got used to them.

However, in the last few months I've had extreme, sudden periods of fatigue, exhaustion, will feel very weak for no reason at all. Not doing anything strenuous but it will just hit me like that. One moment full of energy the next have to lie down or sit down for hours or a few minutes. It's not tiredness like being sleepy or anything but ... energy just goes suddenly. My muscles feel weak, shaky. Like I am about 70 years old. Then passes after a while.

Clued my new doctor up on this and he's been very helpful, arranging ultrasounds and other blood tests from the getgo and at my first appointment. It was difficult, though, because my notes hadn't caught up as I'd just registered with him. So I had to remember everything to tell him. So numerous blood tests later, 2 tests for diabetes ... got some answers which may explain other stuff been going on. Enlarged spleen is something I didn't know about before, though. But is nothing to worry about. As is the fatty liver.

Then this hits me this week. Ending up with me being hospitalized next day when it came on again. It's nothing at all like a normal aura stage/migraine attack ... feels completely different and I've had so many aura stages I now use those as a bench mark. And this felt very different, particularly my legs refusing to move like they did. Something seemed to be interrupting the signal from my brain.

After some advice here and I was pushed into phoning for an ambulance. I felt very bad about doing it as I felt other people needed it more than me. But my doctor's receptionist said I must do that on the phone. Called 999 ... told them what happened, ambulance turned up as I did. Was very quick, must have been in the area I guess.

Got in ambulance, was run through a barrage of questions. Told them what happened night before, it went away, and I felt it coming back on around 20 minutes before calling anyone. One paramedic assumed it was because or down to my reading about my ailments ... I was having a panic attack, was hyperventilating ... was I worried or stressed about anything. I've never had a panic attack, and I know what hyperventilation is. Anyway, some few moments later they agreed to take me to A & E but they weren't keen on it because I probably didn't look like there was anything wrong because I could get in unassisted. Trust me, I did not feel okay, I felt seriously ill. Later, the paramedic told me how ill I actually looked when he saw me initially. Another pm took my blood pressure and on this basis - as it very high, I don't suffer with hypertension as a rule - and that got them to take me to A & E.

Got to hospital, whislt waiting to be seen. Different things started happening including as before some mild confusion, a slight headache in part of my head, part of my face/lips went numb and had severe trouble concentrating on anything anyone said. And was hard for me to tell anyone, cos I just couldn't remain focused on what I had to say. Saw a barrage of different people, gave me tests on my reflexes. They said my reflexes were fine but I genuinely couldn't feel or was aware on some parts of my legs any sensation. And the strength on some parts was different to others. If I moved my legs in a certain way eg towards my chest I lost sensation and I couldn't tell they were there even though I could obviously see they were. Still had lack of sensation in right arm by then.

I got really worried when it was obvious they couldn't find any underlying cause and a consultant came in and ... I honestly felt he was gonna ask me why I was wasting their time. I wasn't. What had happened had started to disappear by then and was hard to explain because I really needed to tell someone whilst they were happening and as they happened. But because I felt confused and unable to communicate properly I couldn't do that. I didn't feel lucid as I said to them. Examined me again and differently to the A & E doctor had done ... down my right arm and side. Partial weakness was then diagnosed. And for the first time it was mentioned I might have had a slight stroke. When I got admitted I tried to tell staff very quickly about my history in that respect, told them I'd had a suspected TIA 2 years ago and quickly told them about my brain MRIs. Only reason I did this is because I know they don't have access to my doctor's notes at the hospital only what I was seen for in the past in my notes. So I gave them as much as I could.

Now, because of the way I was feeling ... and my mind wasn't working properly, I genuinely forgot about the migraine and attacks I'd had. Don't know if this would have made any difference at all. But the paramedic told me in this ambulance that if this was all stress related they'd 'just it out' and not be pleased with me. Well, it wasn't stress related ... although possibly it may have triggered something ... I don't know.

It was only after some time, as the junior doctor seemed to be very confused/puzzled with everything I'd told them. They'd examined me but could find nothing obviously wrong. Yet, what had happened the night before and brought me there then ... something wasn't right. Never have my legs stopped working like that before.

So, until the consultant came in did a test the other doctor hadn't done ... which he'd missed actually ... that stuff about the weakness and slight stroke never came into it. Left in the side room for hours, then saw another doctor I'd seen going to and fro outside. He asked me some simple questions about my sensations, what had happened and then said I'd have to have a CT scan done.

Much later was transferred to an assessment ward. Now I'd already mentioned about the papalodaema in case it was significant. That it was there twice a year apart, but also the MRI's on my brain as I felt they needed to know this with what had been going on. Barrage of doctors again, opthalmascopes. Some said they COULD see something up with my eyes, others couldn't. Mmm. Then finally one specialist said there was some abnormality there.

Sent to general ward, then had CT scan. By which time what had happened earlier had more or less vanished. Started to feel mostly okay. Just like the previous times. Felt very bewildered. First time in hospital. Had blood pressure taken on ward. Was high.

Later CT scan came back 'normal'. So, obviously nothing up there to account for all this. Then I began to worry as I felt I was wasting everyone's time. And because I couldn't communicate well earlier felt that as well.

I'd also mentioned about my enlarged liver a few times. Only found about that literally a few weeks back same hospital. In case it may have mattered to everything.

Was kept in overnight for observation. Next day, felt slightly better. Got up, went to the toilet. Then got a major pain right side just below my rib cage. Was like very very bad indigestion, started to feel unwell again and as had day before. Pain didn't go away. Lasted several minutes. Started to shake slightly, shiver but it wasn't cold and bit later my right shoulder started to shake slightly for a few seconds then stopped. Felt very weak, was quite unsteady on my feet anyway so decided to stay lied down. Just before this, getting my clothes on I overbalanced and fell agains the side of the bed. Then felt very weak again, lacking strength.

Bit later, ward rounds and I think it was a professor or sounded like that saw me on daily rounds. Along with the ward doctor and a nurse present. Various things were discussed between them I only got the gist of but more or less understood. Then again the subject of a CVA was brought up ... that I'd had a main one this time as had a TIA 2 years ago. Which had left me with some weakness down my right side. The subject of my age, being quite young to have one was mentioned. The next part mentioned was new to me. As my CT scan was normal. It was mentioned to me I may have a hole in my heart and I'd need a echocardiogram (?) to find out where or what had caused this slight stroke. Apparently, if you have a problem in your heart like this it goes into your lungs but can bypass your respitory system and go straight to your brain. Apologies if I have that all wrong but I am not medically trained but that's what it sounded like to me anyway.

I explained again what had happened 2 days before, then day before ... brought me into hospital and that I didn't want to phone for an ambulance. And what happened that morning. At the same time I was aware the nurse and doctor seemed to find something very amusing and were laughing and joking about something. Which I found a bit unprofessional to say the least. Whether it was about me or not I don't know but ... it did make me feel uncomfortable. Didn't seem right anyway.

Anyway, I was asked if I was okay to go home then I told the senior doctor what had happened that morning, and I felt very weak again. Only telling the truth because I was. Actually, I felt near collapse with weakness if I'd have to get up, walk. Had that before, but not as prominent nor as long.

So, again the thing about mild or slight stroke got mentioned. Ayway, spent most of the day in bed ... felt very weak, fatigued. And was pretty bored. Had no visitors, everyone else did. Felt a bit spare part in my bed, so just closed my eyes tried to relax let the weakness get better.

And there I stayed until yesterday. Next morning, even though I didn't feel quite right yet, the weakness was coming and going, as was the headache - mostly after I'd walked round the ward for a short while it was quite splitting then went - I had to come home cos I had important things to which I couldn't ignore. And the senior doctor had said I must go home anyway because there was nothing more they could do for me there. But cos I felt unwell stayed extra. All I know was if I'd home day before I probably would have had another episode.

So, things seemed to be getting somewhere. But have a slight nagging now because of some things I overheard and was told before I got discharged. Been prescribed 75 mg aspirin; had those before and after the first suspected TIA anyway so knew what those were about. I got into the habit of forgetting to take them ... so hadn't taken any for well over a year and since the problem developed in my personal life tipped everything on it's head.

Waited and waited. Had a surprise blood test I didn't know about in the morning cos was expecting to be out of there by then. I don't know hospitals, so don't know the procedure so was told had to wait until THEY discharged me I couldn't just up and walk out etc.

Then I was told by the ward doctor couldn't leave until a physiotherapist had seen me and the bloods came back. Physio saw me, gave me some of the same tests had done since in there. Nothing major, just some weakness in one side. Gave me some basic exercises to do per day to bring me back to where I was before this all happened eg with my balance. Still don't feel steady on my feet now and feel the centre of gravity shift a lot when walking or seems to. More like I suddenly 'lurch' to one side but I feel a slight lightheadedness for a split second before it does.

Then had to wait for the bloods to come back. Didn't know what those were for. Later in the afternoon, same head doctor saw me day before did the rounds. He was a bit nonplussed why I was still there ... as I should have gone. Well, so was I. Anyway, it was explained I couldn't leave until I had been seen eg discharged. Then more discussion about my tests, CT scan ... some stuff got repeated ... then what got me worried next and is STILL worrying me ... is they could not access or cannot access the records of my previous suspected TIA. Oh, dear. It then got mentioned was I 'telling them everything'. I was and felt awful hearing that. What has happened to my notes on that??? Have they gone or got mixed up in someone elses??? Made me worry because then I felt I was being a fake. I'm not. I would never have picked up the phone and it took a lot of courage for me to even do it ... because I didn't want to waste anyone's time.

So, more discussion between the staff there as day before. Echocardiogram mentioned again. Something called a d- dimer test that I had eg the bloods ... came back 'negative'. Nothing wrong there. So then I felt even worse because of the stuff about no record of my previous attack and then that at the same time. Was asked if I felt well enough to go home ... well, I didn't really, still don't now as get severely lightheaded a lot at the moment, still can't walk all that well. It comes and goes, is not all the time. Can walk fine one moment, next very unsteady. I don't drink alcohol. Never willl, never have. But that's what it's like at times. Very groggy, very unsteady. They said they dind't want to keep me longer than they had to and were happy to let me go home. Stuff got dictated into a recorder for a letter to the secretary for my outpatient referall. Something about a possible heart shunt was mentioned if necessary. And then I was able to come out. But because it was late in the day, I now feel very awful about everything. Only because no record of my previous TIA could be found.

So, I've got to see my doctor early next week anyway as already had an appointment ... will take the letter they gave me so he understands what has been said, so I don't need to. But it's this stuff about no record has got me really worried now. Because I felt they felt I wasn't being genuine. I was. I actually do not LIKE hospitals and avoid them if I can. Never needed to be in one. Hoped never to be.

But I've been told I've had what they think is a slight stroke ... a main one has was said Thursday ... leaving me with this slight weakness. 'Slight paralysis' actually was used at least once during discussion between staff at my bed. Hypertension was mentioned to the senior doctor as well when he saw me first. Again, I don't get high blood pressure. It's always pretty normal no matter what sort of stress I have been in. Told them that in A & E when it was mentioned to me about stress. I said I did have a problem currently but ... I've had far more worse worries, far far worse and I have never been affected this way. I was very reluctant to mention anything about the stress because I was warned they'd not be very happy with me at A & E in the ambulance if I did.

The crux here is that something has happened to me and I've had it before. The first time I had none of the pressure I have now. None, actually. I've faced being homeless between now and then - in fact was homeless ie had no fixed address for a month living in some strangers house a long way from home - and much worse besides ... I didn't have any aura stages and I know these are and can be related to stress at times. Zip. Nothing. Only since start of this year I've noticed them coming back. Now this has happened. Some new findings. And same thing as before but far worse.

But apart from that I am really more puzzled than ever before. 3 years of unusual things, test results coming back showing findings ... then left completely in the dark about things. I know because I am young there is some reluctance where TIA/stroke is concerned ... I've read of some people like me, having to fight and fight just to get themselves seen properly, by the right people ... pretty terrible stuff I've read. They've got seen eventually but not after they've had a major stroke. And been affected by it.

There's just been a lot of frustration from my MRIs til now. Okay, had an MRI ... something was found ... hang on, though what is it doing there??? Or even how??? What's caused it. No investigations to find out. And none about the optic nerve swelling. No brain tumour was found so, erm, something must be causing it? What, though??

But now because of the thing about no record of my last one ... made me feel awful because it's gonna make me look bad. And make it harder for me to explain to anyone because it seems the doctor I saw at that hospital locally I mentioned earlier never made any notes! Except to tell me I HAD to tell my own doctor what had been said. As far as I remember ... there WAS no communication between that doctor and mine because mine had to ask ME what was said. And nothing was mentioned about him getting any communication about it.

So, now, I am very confused, very worried by all this and ... may just be me reading too much into this but because of what I heard yesterday ... I am worried they think I've wasted their time. Something's gone wrong somewhere with my records of that previous attack. And it should be in my main notes. Heck, I never even KNEW I'd had a CVA as they said Thursday until I heard it. That's a whole 2 years since the sus TIA occured. Apparently, though, that's what doctor's call a TIA eg CVA cerebro vascular accident.

I don't know, I am hoping it's just me right now because I am very shaken up by going into hospital ... and it's still catching up with me. But am hoping I am misreading this whole thing ... because I now feel I wasted everyone's time. I've looked on the letter they gave me on discharge and no mention of any TIA/CVA ... just I was examined and a ECHO, to rule out patent formaen ovale.

I just feel very bad now about all this. But where the heck have my notes gone from what happened 2 years ago??? It just makes it harder now, and stuff like this ALWAYS without fail happens to me it seems eg things get lost, or not filed ... and I have to explain things, each time getting progressively harder.

Noted I have an intolerance to a drug on my discharge letter ... never even knew about that before and wonder where it's come from. Maybe the blood tests they did but surely I'd have to have been on it to have been noted as effectively being allergic to it?

Don't know but may be just me with the shock of getting admitted like that ... hoping it is. But makes me feel uneasy now after hearing that.

All I know is once I saw on my file at the hospital they had mispelled my first name ... which come what may always happens wherever it is because it's not an English name. And it gets mispelled ... I have pointed that out before and you'd assume people would understand WHY it's important to have the properly spelled name and have met with some stupid responses when I have. Like it 'doesn't matter' but hang on ... it does really doesn't it!

So, that's worrying me now as I know files and notes do/can get mixed up. What I had assumed when I was in there is that they'd have accessed those ... then they would have seen what happened before. From what they said they don't exist or 'no record of them was done'.

Do they phone your own GP, though when your in hospital or just rely on the file they have on you when you get admitted? I've been an outpatient several times before and I've only ever seen my file a few times briefly and it's only had notes about what I went there for in them. Not like my own doctor has on their system.

Like I said, hoping it's just me ... and I hope I don't have to struggle now again with all this because I'd like to get some answers. I've had so many of these aura stages or what I was diagnosed as having ... not argued with that and just not called anyone even when they've got me near collapse at times lately ... or felt very ill ... that's the reason I haven't done it. But what also worries me is my doctor's reluctance at the time this happened first ... he took exception I think to the other doctor overuling his initial diagnosis ... The hospital doctor saw me for a few minutes ... and decided what had happened that afternoon was NOT or could be a normal migraine and I had to go and tell my doctor he'd got it wrong. Well, okay, easier said than done isn't it? The hospital one recognised it straight off and from what the paramedic told him. What I had this week was the same, except for not being able to move my legs as they just wouldn't play properly.

So, worrying it's because my own doctor didn't like that and notes were either ignored or not written down properly. And that's why this is happening now.

I don't know, just really worried about it all. Again. Seems I get closer to finding out then gets snatched away again.

It sounds to me like you really need someone to be with you when you see the doctors. Do you have any friends or family who could go with you and keep track of things for you- test results, doctor visits, who did what when kind of stuff? I have had many of the symptoms you have over he past 6 months and have seen 10 doctors so far. I know how you're feeling whne you're having an attack and there is just no way you can give them the information you need to when you are like that. For one thing, they don't have the time or patience to listen to you ramble and get lost in your story so they will end up cutting you off. Also you're not going to remember to tell them important details that will help them help you.

It sounds like your eye problems are probably cataracts. i would do a symptom search on wrongdiagnosis website for cataracts and you neurological symptoms. I think I've come across a syndrome that has all of your symptoms but I can't remember what it is. It's pretty rare though so it wouldn't be surprising for a doctor to not think of it. If I find it again, I'll come back and give you the info.

Good luck. I know how you feel and I'm sorry to hear about others who feel this way.