Puzzled ... went into hospital this week ...

[Guest forgottenone]

Edited

Edited July 28, 2008 by forgottenone
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[Guest forgottenone]

Oops, just realized how long my post was! Sorry, would be shorter but it's because I feel very emotional, shaken up with my hospital stay. Still sinking in.

[poppynurse]

You have been having a tough time and it sounds like you have little support. Out of interest how old are you?

 

Given your symtoms I would be asking your GP for a referral to a neurologist so that they can get to the bottom of things.

 

In terms of your notes, you are quite right, it is important that your name is correctly spelt so that everything pertaining to you is in the same file and available to the drs who see you. The system is that your GP will have his set and each hospital you attend will have their own set. Depending on the circumstances on admission to hospital your GP will be asked for a summary of your file and he will receive a discharge letter explaining briefly what has happened/been done. Every time you go to clinic your GP will be sent a copy of the summary for the notes - you are entitled to a copy of every letter that is written about you.

 

If you have been advised to take daily aspirin it is important that you do so.

 

If you feel unwell again - call 999 - they need to get to the bottom of this.

[Guest forgottenone]

Hello. 40. Neurologist. That's whom I assumed I'd at least get referred to back in 2005 after the eye clinic. I mean, they were so panicked by what they saw went for an urgent MRI. Then nothing. That's what frustrated me because I'd at least thought I would be. Cerebral ischemia. Twice in a row. No referals to anyone by same doctor. They've looked everywhere else except through a neurologist.

 

Someone I know is very medically trained, used to work for the NHS. They've said to me before about this. Plenty of times. Between 2005 and now is only the times I've needed to see a doctor. Never really had to before. Cos I only go when there is something wrong. Thought I was doing the right thing there. But I've been so many times since then to last many life times. Trying to get to the bottom of this. I don't know what it is but there has been a reluctance to follow up anything. Then that makes me think 'why?'

 

The papolaedema is still there. They saw that - eventually I add, cos least four doctor's couldn't see anything; just like my own at the time 3 years ago, yet the optician strongly disagreed as she said it was something called 'white ring' or in layman's terms it was, pretty unusual for someone of 36 to have it anyway - in the end. Maybe they thought it had gone away. But it's still there. After the second eye clinic, same thing. MRI results same. Then zip. No further investigations to find out why it was there. In fact, my doctor at the time said it was probably there from birth. But that didn't explain the papoledaema. The fact is my doctor didn't really know. But never referred me to someone who DOES know what this all means.

 

I was very, extremely TBH, frightened about being discharged from hospital because if it happens again, I am lying unconscious or worse in the house no one is hear, my neighbours wouldn't bother noticing anything was wrong. No one would know. And it frightens me. It genuinely does. I've had some more shorter periods last night where I've had a peculiar headache, very low, can hardly feel it mostly between my eyes or forehead and then lightheadedness.

 

Just before typing this, sitting here perfectly naturally at my computer. My left hand was resting at my side, against my knee. Started to tingle very badly, throb for a few minutes quickly. Gone now, but was strange. Almost went numb but not quite.

 

But what upset me the most was ... I overheard some of the nurses talking and it was clear they thought I wasn't being genuine. I've come home, been so shaken with my going into hospital and keep wanting to cry with the shock of it.

 

Got aspirin but worry I will forget to take it like I have before. Used to take it without fail then my life changed suddenly and began to forget. Part of it was because I felt fine and part not remembering I had to take it.

 

As to support. None. I don't know how to get my doctor to refer me to a neurologist - cos this is where I should have gone down to back 2005 or you'd think I should have given the findings - and it seems to me everything else has been tried bar that for some reason. I am not pushy, and I don't fly into doctor's surgeries demanding I get seen like some who have nothing wrong with them do; go with entire families etc. I am very quiet, very softly spoken, not very confident and that sometimes I have problems telling people like doctors things are serious because of it. I feel brow beaten. Just I've been down this route so many times in different parts of my life, got nowhere and it's become a very definite pattern. Very complex.

 

So any tips on making or getting him to do this would be wonderfully appreciated. Even though they say my reflexes are fine, I honestly cannot feel parts of my legs at times. But I just cannot seem to get anyone medical to see this or do anything. So, keep getting left with this sheer frustration.

 

On my discharge note - which is really short, only itemised as you'll probably know in very short sentences, few words - it mentions a PFO. That was mentioned to me second day was in there. If it turns out that way why am I able to live a 'normal' life without problems?

 

It's all very worrying and just those 2 days in hospital have made me feel very bad eg wanting to cry about it. I find it hard to put things down in words when I am like this.

[Guest forgottenone]

All I woud add is that my friend I mentioned has been so annoyed that key things haven't been done to follow anything up. Including seeing a neurologist. Flabergasted isn't the right word to describe how they've felt when I've told them I've got nowhere again. Once they told me they knew something who used to cough up blood regularly, something was obviously very wrong. He went to the doctor's and, like me, got nowhere. Doctor didn't believe him, because there was no evidence. In the end, he had to get video evidence to proof he had been coughing up blood. Coughed up a lot as I was told.

 

He died not long afterwards. Maybe if I DID yell, scream at the doctors I might get somewhere. But I don't behave like that and maybe that is and HAS been the problem. I'm too polite, because I am softly spoken ... it gives the wrong impression. Actually, there were some really rough people in the assessment ward came in ... who DID behave like that, the language, general attitude. One of them was asked to leave the bedside or they'd get sent somewhere else by a nurse when their friend was having a severe panic attack. And they caused a lot of problems on the ward before I got moved.

 

I will never behave like that, though. Not like that. But it does get on my mind that is that what it's going to take for me to get dealt with properly? There have been so many changes lately at my health centre and you cannot now just get an appointment with your doctor ... it's all wrong ... and it's actually preventing you from accessing your local health services. Very offputting and that's why mostly I've not been before now. Because it's been offputting. All these barriers.

 

Mentioned on another thread this week that I was actually asked, yes asked here, by the GP receptionist WHY I wanted to see my doctor before seeing him! That really did annoy me. For starters non medically trained receiptionists are making calls on whether you are ill enough to see your doctor. Seen it all before, as have others here probably. We've all heard of children being taken in, receptionist has considered they have a 'cough' before letting them see a doctor then ... turns out later it's much more serious. They've split into 2 sections now non and urgent.

 

There are even disturbing notices up in my health centre about no wasting your doctor's time with things like coughs, sore throats, headaches but see pharmacist or walk in centre. What about asymptomatic symptoms, though? Which mine obviously are? It's all wrong.

 

So, in the end, they are going to put people off who do need help. Mostly the elderly I'd think who, like me, were brought up in a different time, set of values.

 

All I know is I am going to have severe problems accessing my doctor from now on because it's all changed there. So, really, don't know what to do. I wish very much I could go back to live in my home area, where I know I'd not have this, least I would be with familiar faces I've seen before and know I could get to see my doctor when I needed to.

[Guest forgottenone]

One thing I do do a lot, and I don't even realize until I have done, can be seen above with my posting. I am getting simple words mixed up. Happens a great deal, I don't even realize I am typing the wrong word eg 'something' instead of somebody. My brain thinks I have typed it out and my fingers do the typing perfectly naturally - I am or was a proficient typist before now so I shouldn't be making such simple typographical errors - and 'hearing'. Just little things which have become more noticeable. And, like I said, I am still young. But all these things been happening ... particularly from the first MRI which brought the surprise results are things I know happen to people in much older or later stages in their lives. And that's what's puzzled me the most here. Why, around 20 to 30 years earlier in my life am I having these things happen?

 

I don't think, don't do drugs - never have, never will - and never smoked in my life. Keep getting asked this over and over again. All I can say is 'no' and there is only so many times saying no until you start to realize why is nobody listening?

[poppynurse]

I would write to your GP and ask politely and firmly to be referred to a neurologist so that the symptoms which are having such an impact on your life can be fully investigated.

[Guest forgottenone]

Hi, again. Went to GP this morning. Was a bit late cos taxi never turned up when booked! Just made it in with 1 minute to spare. Went more or less straight in ... a 'trick' I've noted with other late patients ... come in late, don't have to wait, get buzzed straight away.

 

Anyway, when I went in I couldn't breathe, was very breathless. Doctor asked me if I'd been running. Nope. I didn't feel any different but was obviously having problems breathing. Had to wait til that settled down til I could continue.

 

Cutting a very long story short here. Given the time involved ie only last week was in hospital, GP hadn't been notified I'd been in there. Okay, could live with that as things hadn't caught up yet. Explained quickly as I could what had happened. Gave him the discharge notice. Bit later, when I mentioned about being hypertensive - my blood pressure was 140/110 in the ambulance before they took me to hospital and didn't come down until around Thursday afternoon - blood pressure was taken again. Apparently it was 150/96 this morning. GP looked slightly worried when I asked 'is that high?' Okay, I know it is but needed to get some feedback. Apparently it was way over what it should be. But because I appeared to be hyperventilating or taking very short breaths, looked physically exhausted when I went in, it was put down 'to the context' of that situation. However, I have never been hypertensive - never even heard of the word before hospital last week - in my life, my pressure has always been 'normal' and was mentioned it was back in April as normal levels. Anyway, given my GP's face upon seeing this high level ... then said wouldnn't act on it because I was hyperventilating when I went in. And was disregarded. My blood pressure has always been the same. Normal or between. Not high nor low.

 

Was in a while because I had to go through everything as he didn't have my notes from the hospital yet. Understable under the time frame. I mentioned again about suspected TIA, all the other stuff including severe aura stages. Don't know what's gone wrong or anything here but ... it would appear my last doctor hasn't updated my notes, put anything about this anywhere. Or that's the impression I had this morning.

 

Mentioned about the MRIs again, ischaemic findings, papalodema, same found last week apart from the ischaemia of course.

 

Got to wait now until he gets the proper notes from the hospital to find out what to do next. Mentioned I was extremely frightened it would happen again but GP thinks it won't. Mmm.

 

What I have now done is started chasing up the opthalmologist I saw twice - 2005 & 2006. Because I dropped off the system as a result of life changes ... until recently. So, from what I was told this morning by the eye clinics secretary, that means if I do not turn up for an appointment I am kicked off the waiting list more or less for good. Automatic. All I know is I had an annual review 2006 leading to more MRI findings. But didn't know if was supposed to have one last year after another year passed.

 

So, because of that it's all got very complicated. And it may even be a letter went to my old address about one. I never saw it. But I DO know some medical letters have gone to that old address. I have had to instruct the council in no uncertain terms there to ensure the current tennant either passes it to them at their offices or destroys it. Only reason I found out medical letters were going there was purely by chance my contacting a hospital I have annual reviews with for something else. Then I made sure that hospital updated their records. Again. So, there is a high probability letters have been going there.

 

So, what I am going to do when the secretary phones back- gona get my notes from the ward to see if I am having a referal to them again cos I explained no one had said anything despite papaloedema being found again - it try to get copies of my referals and the results from my MRIs. Because when I asked about my MRI's weeks back, when explaining my history in that area, it's been incorrectly entered somehow as my having a CT scan. I didn't. For starters, the 2 machines look completely different. In different rooms. I also had to remove all metal objects from my pockets before having them done. Including detailed questions about any metal work I'd done in my life, welding. So I know 100% I haven't got things mixed up. All I know is the CT changed without warning to MRI midstep before the first one. But it's on my medical notes on the system I only had a CT scan not MRI. Now, clearly, apart from my records being wrong ... lots of worry, my explaining over again I had an MRI NOT CT ... spent around 20 minutes in the MRI machine, cylindrical thing, made one HECK of a lot of noise and had a full MRI done of my neck/head ... it does matter because they are not the same kind of scans so one shows a higher definition, more quality than the other. It was mentioned a few times in hosspital between ward doctor and senior one about my having another MRI ... It's been explained to me I've had the CT scan done this morning. To see if there was any swelling in my head. Wasn't.

 

Anyway, so waiting for them to phone me back now. Think I need to start investigating this now more closely, get a chain of events if I can. I have the letters saying MRI and the results here somewhere. Trouble is, cos of how many times I've moved since 2006, it could be anywhere in boxes. So better I get another copy of them if I can.

 

So, now, just waiting for notes to catch up with my GP. Then whatever comes next. But from what I know, something is up with my notes. Cos seems to be an awful lot missing which I know DID take place.