I'm getting a little worried my hospital has mis-diagnosed me, please reassure me.

[ELF1981]

Since the end of November I had been having terrible migraines, the type that mean you cannot move without your brain hurting even more.
Mid December I was taken to hospital with another migraine and loss of movement down one side of my body and unable to speak. I was very confused and scared at the time, I spent three days in hospital, doctors thinking stroke or severe migraines.
I had a CT scan, but never went for the MRI scan as they changed their mind.
On the third morning a new doctor diagnosed me with hemipligic migraines (which cause paralysis down one side temporarly) and discharged me. No consultant / doctor discussed the CT scan with me except with reference to they needed a neurologist to look at it, and then suddenly they said it was okay.
I'm still getting headaches. I'm still having days of being really sick - unable to get out of bed / throwing up even water / weak and confused. This lasts a day to a day and a half.
My local doc is unhappy with hospital discharge and trying to get my medical file so he can review and treat me.
Co-codomal tablets not helping the pain. Anti sickness tablets not stopping the sickness (on 3rd type now).
Had an optician appointment and they said the pressure in my eyes were high and put me on a six month call back.
I'm panicking this is something serious as the doctors keep saying things re brain tumours but hospital said CT scan clear so they are not sure what is wrong.
What is the likelyhood the hospital has screwed up? I'm 26 and getting very scared.
Please reassure me. Doctors cant do anything without my file and they said the hospital (QMC in Notts) is terribly slow and giving out files.

Elf, sounds so horrible for you - and you really do'nt need the worry of unclear communication from the hospital, makes me for you.

If you've had the scan and it was clear, that has to be good. But ongoing migraines, or whatever, of that intensity - obviously not ok. Your GP sounds good though, do you trust him/her?

NOt sure really what to say, but wanted to bump for you and wish you luck with getting the info you need...I'm no expert, but I'd guess that its unlikely the hospital screwed up reading your CT results, but very likely they screwed up on explaining their findings to you and/or communicating with your GP so he can treat you.

Elf - sounds bloody awful. Why don't you contact their PALS officer and DEMAND your notes immediately. You might have to pay £30 for the privilege. Alternatively instigate a complaint and you'll be surprised how quickly your notes are passed on!

Sorry to hear this.AFAIK,QMC have a fab reputation with regards to neurology.But if they can't diagnose you,they should keep trying until they get some answers.

Agree with whomovedmychocolate with regard to PALS.Would it be worth going to A&E & refusing to go until someone takes you seriously?It sounds a terrible situation to be in.I do hope you7 get some answers soon.

I will try their PALS officer. I didn't know I could request them myself! Last time I was in hospital (exlc having my dd at a different hospital) I was 10 having my tonsils out!
Just getting so fed up of being sick so much, espcially as there is no reason behind it.
Not complaining too much about the nearly stone I have lost in the process though

Please go back and see your GP and insist that you are referred for an MRI or to see a neurologist yourself (rather than have a junior doctor consult one on your behalf). It's almost 100% likely that they are right and it is just (and I say 'just' but I know how awful they can be) a migraine, but CT scans are good at showing up lesions eg from a stroke but NOT good at showing up masses...MRI is the gold standard for this.

You need to have an MRI to rule out anything else, if it's clear then it's not been a waste of time has it as at least your mind will be easy?

I always go with my gut feeling; if yours is telling you that they have not thoroughly investigated before making a diagnosis then go with it

Do you have any chance of paying for an MRI scan yourself? My dad had to wait months and months and in the end paid himself. I think its a few hundred pounds. I just think you could end up waiting months if you go via the NHS

Depends where you are and how urgently you are referred; an MRI Brain should be done relatively quickly for obv reasons but if you are given a 'routine' appt can be up to 18 months!

Working in the NHS, can tell you for a fact that the more noise you make = the more quickly you are seen, noone likes complaints on their records

ONe thing in my dad's case was that he had an NHS consultant waiting to see him. He'd been to one appointment but the consultant couldn't do anything because he hadn't had the scan. The consultant said there was absolutely no point seeing him until he'd had the scan. So they arranged another appointment with the consuiltant, then as the date got closer- still no scan- it was at that stage he decided to pay or he'd have had to wait for yet another consultant appointment iyswim.

Poor you. I had a much milder episode than you with weakness and loss of vision on one side. I had no headache but was referred for MRI straightaway. I didn't have it as I was pregnant at the time and the neurologist said their could be a risk to the baby. I had it as soon as dd2 was born and it was all clear and I was diagnosed with migraine - despite no headaches. Please try not to worry as a CT scan would have shown a tumour I am sure. But you should insist on a MRI to put your mind at rest. All this worry will only make all your symptoms worse. Maybe try to avoid all known migraine triggers in the meantime to see if this helps your symptoms. Mine was stress related. I am sure its migraine, but you need reassurance and as soon as possible. Good luck x.

Forgot to add I had high pressure in my eyes too and visual disturbances. The neurologist said all this was normal (for me!)

Thank you for the replies. I will talk to my dad re going private for a scan, unfortunately I cannot afford it, but my dad would possibly pay because he is getting really worried that nobody is taking it seriously enough.

I totally worked myself up today by thinking if I looked up the "symptoms" of a tumour, I'd find a stack of symptoms that I didnt have and reassure me, but not the case!

How are things today ELF1981?

Elf
Hope you're feeling better today. You must ask why the CAT scan wasn't checked over by the consultant, and why you weren't given an MRI. It could be a mistake - they do happen, and although I'm sure it will bE fine. You have to get peace of mind, so it looks like a bit of nagging!

well, I am feeling slightly better, though still with the same symptoms and I really feel it when I am at work and push myself too much.

Am going to pop into the docs and speak to them to see if any progress, not heard anything yet.

I think like others are saying you need to push for an MRI scan to put your mind at rest that the symptoms are due to migraines, but just wanted to also say, as I know this is what you are concerned about,that I worked for an optician for a while and he diagnosed more than one brain tumour whilst doing eye tests so it is good that your optician didn't mention anything other than eye pressure.I tend to have highish eye pressure too and I have to go for annual tests - I am also prone to migraines and they also said that sometimes eye pressure can be a bit higher in short-sighted people.. Hope you get some reassurance soon

I agree with Winetimeisfinetime about the optitician thing.A lady I know was diagnosed with a brain tumour after her optician noticed something amiss.He sent her off to the hospital immediately,so I'm sure that if your optician was concerned at all,he would have sent you straight to hospital.

thank you for reminding me re the optician, I remember reading somewhere how they can diagnose things like tumours. that puts my mind at rest a little. The optician did say to me that the pressure could be okay for me hence six month monitoring to see, but could be a sign of glucoma, nothing else.

It was an optician who diagnosed me with conjunctivitis in the back of my eyes which had not healed from the drops, and sent me to hospital, so they may be a pain but they have really helped me in the past, I forgot about that.

Bupa can offer MRI scans for several hundred pounds really quickly, with results in a few days, but push for one on the NHS fist and find out likely waiting time - for test and results.I work for the nhs but when told I'd have to wait three weeks I had one in two days with bupa.But it sounds more related to migraine, they can have really weird effects.