Good ophthalmologist?

[Purpletop]

Does anyone know/has experience with a good ophthalmologist down in Surrey or London, please?

I've been having blurry vision in my left eye for the past month, some days worse than others. I've been seen by 3 different ophthalmologists who did all kind of tests and found nothing wrong. I've specifically asked about GCA - they looked again and said that there was no sign of it.

During the night I have slight pain in my temple but that goes away as I get up. I've even been to A&E but I was told it wasn't GCA.

I'm also seeing a neurologist because my eye lid is not opening properly either but he has found no reason for the blurriness.

I'm desperate - there must be a reason for this blurriness. I actually don't know how to describe this - the vision is fine but I feel as if I have a film over the outside of my eye, with the centre being fine.

I'm thinking of going to see another ophtalmologist, or better still, a neuro-ophthalmologist. Do you have any good experience with any, please?

Thank you.

[polkadotcom]

If you can get there, why not try Moorfields Eye Hospital? They deal with all kinds of visual problems and may be able to help.

[Purpletop in reply to polkadotcom]

I've been there already - I decided to go to A&E at Moorfields as soon as the 2 local ophthalmologists found 'nothing wrong'. The problem is that the consultant at Moorfields found nothing wrong either.

I'm at a loss as to what to do next. I'm reading the posts here and I'm getting even more worried. I don't have the 'normal' GCA symptoms - for example at the moment my left eye is blurry but I have no head pain, no jaw pain and I feel fine. I can't get a feel from the posts here whether people who lost their sight had any other symptoms at the time but to me it seems that there isn't necessary to have other symptoms before losing the sight.

So I can only try seeing a good ophthalmologist privately. And soon.

[PMRpro Ambassador in reply to Purpletop]

If Moorfields didn't find anything then however much you pay for a private consultation it is highly unlikely they will find anything either. Until there is reduced blood flow to the optic nerve nothing will show up on an eye examination - and then the part of the retina where the optic nerve joins will start to change in appearance.

I have had a blurry "feel" to my left eye, as if there was a greasy smudge on my glasses, since the very early days of PMR. At one point I developed double vision in the mornings after waking and the rheumy here increased my dose back to 15mg/day from about 8mg. The double vision improved and I have had no further problems. The blurry bit of my vision has persisted - it is almost certainly due to a "floater" but even that has improved and disappears if I squeeze my eyes hard. I'm now on 4mg/day, had a hospital eye clinic appointment recently and she could see nothing to worry about. Pred can also cause blurriness.

There really isn't any point trailing from one eye specialist to another - if there is nothing to see on the retina then there is nothing more they can do to look at the optic nerve which is where any damage might occur. Nor can a neurologist or anyone else. If anything, an ultrasound of your temporal artery might show something - but even that is less likely when you have been on pred for some time and it is only available in certain centres, it is not a routine test as there are not enough trained personnel. It is available at Southend as far as I know.

[Purpletop in reply to PMRpro]

Thank you - I think I'm starting to come to the same conclusion about yet another ophthalmologist. It is so frustrating not to know what causes this.

But - I've decided to start a short course of steroids. If there is inflammation, then it will respond to those. I've already agreed with my rheumatologist to start these if lupus hits back, so I'm hoping to hit 2 birds with one stone.

If the blurriness doesn't resolve with steroids then there is something else causing it. I keep trying to get the gp to send me to ENT, in case this is due to sinus infection but no such luck, there is so much reluctance to refer nowadays.

[PMRpro Ambassador in reply to Purpletop]

As I said, I've had something similar in my left eye for probably 10 years now! My optician checked it, took photos of the retina to compare, and was 99.9% sure it was due to the floater. Floaters don't always move it seems, despite their name, and this occasionally annoyed me when driving if I had to look at one particular distance, but otherwise its fine.

[bluejaygirl]

I do NOT have PMR but my wife does hence the connection to this site. I however have had the EXACT same symptoms as you have described for over a year now and have been fraught with finding the cause as well. I have temple pain from time to time but usually felt a little all the time but sometimes much worse than others. It used to go completely away when I would arise but not anymore. I also have blurry vision that comes and goes, a sometimes droopy eyelid that comes and goes, more floaters in that eye than the other also. Have tried multiple prescriptions for eyeglasses from different places and different eye doctors as well. None can seem to find out the the problem is. My right eye also gets tired real fast when reading or watching a few hrs of tv to the point there it hurts so that you want to put pressure on the eye and sometimes that will make it feel better but it just doesnt go away. I sure wish we could find out what the problem is as it seems to be getting progressively worse albeit very slowly.

The husband

[Purpletop in reply to bluejaygirl]

That's interesting. Are you diagnosed with anything else autoimmune?

[bluejaygirl in reply to Purpletop]

No I am not and you were the first person that I ran into that has exactly the same symptoms that I have. The only thing I do have I just found out is atrial fibrillation

[bluejaygirl in reply to bluejaygirl]

I meant to say no I do not have any autoimmune disease is but my auto correct changed it

[Purpletop in reply to bluejaygirl]

What medication are you on for AF? I'm very much of the view that this has been triggered by meds, in my case ciclosporin, an immunosuppressive.

[bluejaygirl in reply to Purpletop]

I have known myself that I have had afib for probably about a yr. Finally went in because I couldnt fix it myself by diet and exercise and vitamins and they diagnosed afib in about 5 minutes. Cardiologist put me on coumadin and and anti arrhythmic drug about a week ago until I have a catheter ablation in about 3 weeks to see if they can fix it surgically. I got about a 65 % chance with that of a permanent cure he told me. I am crossing my fingers

[bluejaygirl in reply to bluejaygirl]

I was not on a single medication before this.

[Purpletop in reply to bluejaygirl]

Sounds scary, good luck with the op! Meanwhile I'll try and find the cause for the blurriness. If, like PMRpro says above, this is a floater, than there're nothing we can do about it. But floaters give no pain, though. Have you had your sinuses checked? Sinus infection could affect the eye sight in this way. I've had an MRI of the orbit that was normal but I'm not sure that's sufficiently sensitive, ct scan is more appropriate, I think.

On the other hand, if it is neuro-toxicity from the drug (which is what one of the ophthalmologists told me) lets hope it isn't irreversible and things will soon improve. Here's hoping.

[bluejaygirl]

I'm pretty sure my sinuses are just fine at least I hope. I'm pretty sure there's something going on in either in the temple area or with the nerves that control the eye movement and focusing , but I have no idea what. If you find anything out let me know.

[Purpletop in reply to bluejaygirl]

I suspect is some kind of paralysis of cranial nerve no 3. Have a look at this link, although my pupil movement is ok richmondeye.com/eyehealth_d....

[bluejaygirl in reply to Purpletop]

That article was very interesting thank you for posting it sounds very much like what I am experiencing

[Purpletop in reply to bluejaygirl]

Yes, me too. I'll now push to see a neuro-ophthalmologist to see what he says. Meanwhile I started to take Prednisolone for lupus flare and the right eye started to play up. I can't go on like this - I need my meds for lupus. Will the choice be between lupus and having closed eyes?

I was thinking that in your case the AF could have caused this.

You focus on your heart op and I'll keep digging and will let you know.

[bluejaygirl]

Thanks and please do let me know what you find out. I am also very concerned and curious as to what might be causing this malady.

[Humphrey691]

I'm so pleased to have stumbled upon this post. I'm currently in Hospital with debilitating headaches, droopy left eyelid and slightly blurry vision in left eye. Initial eye tests showed no inflammation at the back of the eye and they've put it down to conjunctivitis although the Rheumy is far from convinced! Historically I've been diagnosed with IGA Nephropathy (biopsy proven) and Professor thinks I have an additional vasculitis (? behcets as mouth ulcers have responded to colchicine). I'll be watching this post with real interest.

It's reassuring to know that other people are facing similar challenges and frustrations!

[Purpletop in reply to Humphrey691]

Since the post I managed to see several ophthalmologists, 2 neurologists, 1 neuro-ophthalmologist, an optician, an orthoptist and had numerous eye checks and electrodiagnostic tests, visual fields, MRIs, blood tests. No one can say what the cause is - the neurologists tend to fall back on the usual "it's a migraine" diagnosis but my eye is constantly cloudy now, despite all tests showing good vision.

So - no luck in getting to the bottom of this after 7 months of doctors and tests. Maybe you get lucky and find out. If so, please share the result, it would be great to know!