Eye problem / getting a second opinion in the NHS/ UK advice
April 30, 2018 7:33 AM Subscribe
I've got a problem with my eye, I've gone through the system but I'm left not knowing what the problem is. Advice wanted on what it might be and getting a second opinion.
I know your not my doctor etc...
Just over a month ago I realised I was seeing double (I was ill at the time and not wearing my glasses so everything was blurry but this was not normal). I also noticed I had an obvious squint that I'd not had before. A quick aside - I had a problem with my left eye as a kid. I grew out of it but it can sometimes turn in when I'm tired. However this was very different. I rang up the NHS help line and they said I needed to see a doctor asap. It was a Sunday so they booked me an out of hours GP at my local(ish) hospital.
Doctor examined me and booked me in at the eye department for the next day (at another hospital - they were handling emergencies that week). He told them (not me) that my right eye was not moving outwards past the center line.
By this time I was terrified... consulting Dr Google = Brain turmour, MS, lots of other horrible things
Went to the hospital the next day. Saw an ophthalmologist who did a lot of tests, saw a doctor who did a load more. Told me he was booking me an MRI scan and blood tests. Still terrified I did ask if he could tell me anything... no, not yet.
Around this point I found out they had my old address on my records. The doc thought I was diabetic when I wasn't (the ophthalmologist had got it wrong, I presume because they asked me). He thought it was both eyes when it wasn't (again the ophthalmologist). I was to go back and see them in a few weeks.
Since then eye has got a bit better - it can move but seems slow/stiff and at times seems to 'stick' when I've both eyes open. I don't see double all the time but it's worse with moving objects and even when not double its not right. I've still got a squint. Some days are worse than others (bother eye movement, squint and vision wise). I have to wear an eyepatch to use the computer for instance.
When I was went back to the eye department last week I saw a different ophthalmologist and doctor. Ophthalmologist tested me again and said it might be a 'cognitive spasm' (I think) which she says is rare... So rare I can't find any info on the internet. She did a load more tests but didn't tell me any more. Then I saw the doctor he looked at my eyes and said you've got a squint. I said it was knew but I get the idea he didn't believe me - told me you had treatment when you're 14. I said no, when I was a little kid and that it was never as bad as this. He kinda mumbled something then said get a new pair of glasses (I've had my glasses for a while but my eyesight was fine up until the current problem) and that was that.
Another aside - found out on the second visit they had my telephone number wrong - so I'm slightly worried that if something urgent had turned up in the tests they would not have been able to contact me.
I managed to see an optician on the same day as the hospital visit. They told me I needed new glasses but that my prescription had not changed much. I don't expect new glasses to magically make my eye muscle work.
I've rung my local surgery to see my GP - the earliest I could get in was Friday. I rang up the RNIB advice line (that's the UK's main charity for blindness/sight loss). Their advice line was busy but they put me through to one at Moorelands hospital (that's a big specialized eye hospital in London). They could not tell me more but were super keen to have me in for consultation.
OK, sorry for going on a bit but... I know you're not my doctor but any advice appreciated on what it may be / if it'll get better and getting a second opinion in the NHS.
I know your not my doctor etc...
Just over a month ago I realised I was seeing double (I was ill at the time and not wearing my glasses so everything was blurry but this was not normal). I also noticed I had an obvious squint that I'd not had before. A quick aside - I had a problem with my left eye as a kid. I grew out of it but it can sometimes turn in when I'm tired. However this was very different. I rang up the NHS help line and they said I needed to see a doctor asap. It was a Sunday so they booked me an out of hours GP at my local(ish) hospital.
Doctor examined me and booked me in at the eye department for the next day (at another hospital - they were handling emergencies that week). He told them (not me) that my right eye was not moving outwards past the center line.
By this time I was terrified... consulting Dr Google = Brain turmour, MS, lots of other horrible things
Went to the hospital the next day. Saw an ophthalmologist who did a lot of tests, saw a doctor who did a load more. Told me he was booking me an MRI scan and blood tests. Still terrified I did ask if he could tell me anything... no, not yet.
Around this point I found out they had my old address on my records. The doc thought I was diabetic when I wasn't (the ophthalmologist had got it wrong, I presume because they asked me). He thought it was both eyes when it wasn't (again the ophthalmologist). I was to go back and see them in a few weeks.
Since then eye has got a bit better - it can move but seems slow/stiff and at times seems to 'stick' when I've both eyes open. I don't see double all the time but it's worse with moving objects and even when not double its not right. I've still got a squint. Some days are worse than others (bother eye movement, squint and vision wise). I have to wear an eyepatch to use the computer for instance.
When I was went back to the eye department last week I saw a different ophthalmologist and doctor. Ophthalmologist tested me again and said it might be a 'cognitive spasm' (I think) which she says is rare... So rare I can't find any info on the internet. She did a load more tests but didn't tell me any more. Then I saw the doctor he looked at my eyes and said you've got a squint. I said it was knew but I get the idea he didn't believe me - told me you had treatment when you're 14. I said no, when I was a little kid and that it was never as bad as this. He kinda mumbled something then said get a new pair of glasses (I've had my glasses for a while but my eyesight was fine up until the current problem) and that was that.
Another aside - found out on the second visit they had my telephone number wrong - so I'm slightly worried that if something urgent had turned up in the tests they would not have been able to contact me.
I managed to see an optician on the same day as the hospital visit. They told me I needed new glasses but that my prescription had not changed much. I don't expect new glasses to magically make my eye muscle work.
I've rung my local surgery to see my GP - the earliest I could get in was Friday. I rang up the RNIB advice line (that's the UK's main charity for blindness/sight loss). Their advice line was busy but they put me through to one at Moorelands hospital (that's a big specialized eye hospital in London). They could not tell me more but were super keen to have me in for consultation.
OK, sorry for going on a bit but... I know you're not my doctor but any advice appreciated on what it may be / if it'll get better and getting a second opinion in the NHS.
This sounds really stressful, and it sounds like much of your concern is that you aren't getting consistency of care - this is really typical with eye stuff as specialisms are very poorly distributed, so you will need to document what advice you get so that you are able to advocate for yourself. Could a friend or partner go with you next time?
The eye hospital in London is Moorfields and they do have a walk-in facility for emergencies, however the waiting times can be lengthy so it's best to go early in the day and be prepared to be there a while.
If you can't get to Moorfields you can still go back to your own GP, but do head to ER if your vision gets worse quickly.
posted by freya_lamb at 10:02 AM on April 30, 2018 [2 favorites]
The eye hospital in London is Moorfields and they do have a walk-in facility for emergencies, however the waiting times can be lengthy so it's best to go early in the day and be prepared to be there a while.
If you can't get to Moorfields you can still go back to your own GP, but do head to ER if your vision gets worse quickly.
posted by freya_lamb at 10:02 AM on April 30, 2018 [2 favorites]
I don't think you can go to the Moorfields A&E - that's more for 'chemical in the eye' level emergencies. Just as an FYI for other commenters, A&E departments aren't really like ERs in that they really, really won't treat non-emergencies, because they know that everyone does in fact have the option of going to a GP for less time-sensitive stuff. It does sound like you want to get referred to a specialist there, though. Go to your GP and say 'hey this is a problem, let's solve it together' and tell them that the Moorfields helpline people recommended that you go there for a consult. Don't go overboard in complaining about the other consultant, or about the level of administrative chaos which unfortunately is normal in some hospitals, especially at the moment when everything's underfunded and stretched to the absolute limit. But I think you're right to flag up the fact that the doctor told you it was a 'squint' and didn't seem to understand that this was a new problem. You will get pushback for asking for a second opinion, because it's expensive for the CCG to fund this, but you just need to be firm about it and ask what other solutions the GP is able to suggest I'm sorry you're having to deal with so much stress and anxiety, and hope it gets sorted out soon.
posted by Acheman at 3:30 AM on May 1, 2018
posted by Acheman at 3:30 AM on May 1, 2018
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posted by DarlingBri at 7:38 AM on April 30, 2018