Forum

light snsitivity

Hello, I just wondered whether anyone with CFS, fibro or ms ever experiences sensitivity to light? Also, whether you often see colours and light behind your eyes when you close them? Was wondering whether it could be related to optic Neuritis at all and if anyone’s experienced something similar? I’m seeing my neurologist for a second appointment soon, although ms hasn’t been mentioned yet, and wondered whether it was something worth mentioning to him… Thanks a bunch Wheeze x

Background - I was told a couple of years ago that i have cfs and fibro following numerous symptoms, main one being fatigue, and blood tests. No other kind of examination, scans or tests were done. I accepted this diagnosis as i was keen to have a label for my symptoms which made it easier to explain to friends and family and to avoid getting sacked from work. Since then i have plodded on, putting everything new down to cfs & fibro until recently when i couldn’t walk. I have seen neuro and i am waiting for mri results. i have extreme light sensitivity. Worst is when i am driving. I wear sunglasses all the time even when it is raining. have you seen an optician? If not then this maybe worth a try as it maybe totally unlinked to your other symptoms. Your optician can refer you to hospital for further investigation if required. You mention optic neuritis which an optician could discuss with you. Also if it is unrelated then you will be on the way to finding out what is causing your eyes to be so sensitive to light, rather than waiting. i would be inclined to mention it to neuro so they have the full picture. hope that is useful.

Thanks birdlady, that is helpful.

I’m hoping to book an opticians appointment soon as its been a few years…I also find it hard driving, particularly at night and suffer a little as a passenger too.

I struggle with walking as well and get stiff, heavy legs, its kind of like my legs have forgotten how to walk but my brain still remembers, which i appreciate is a strange way of describing it considering its your brain that tells your legs how to walk!

Seeing the neuro is in its relatively early ages and I’m unsure if some things arelinked and other just an effect of the fatigue, but i’ll be sure to mention it to him when I see him

Thanks again for the advice :slight_smile:

HI Wheeze

I was diagnosed with ON a couple of weeks ago. I don’t have any light sensitivity but I do see kaleidoscopic moving shapes/patterns when my eyes are closed. It’s also a very ‘bright’ pattern. Sometimes I can see this pattern when I’m laying in bed in the dark with my eyes open.

I don’t have any other diagnosed problems but am off to the neuro at the end of the month xx

Hello Wheeze. I’ve just recently been diagnosed with MS. Yes I am sensitive to light even indoors…television…sometimes worn sunglasses to watch telly. Have seen colour and light behind my eyes when closing them. All symptoms are worth writing down and mentioning to neuro. Give him a copy for your notes. Good luck

Hi Wheeze

I have recently returned from a holiday in LAnzarote. I saw optician in Dec 2011 who said she could not prescribe any glasses foe me & referred me to hospital. SHe said my eyes did not work together and said, if I was a driver, then I would have to give up my license (I don’t drive). Anyway after loads of tests at Barnsley hospital I was told by the opthalmic registrar that I had MS. I had various eye scans and at the end of the appointment he showed me a piece of bright red card and asked me to look at it - one eye at a time. The card was much less bright when I looked with my right eye.I got further appointments with his department and also neuro apptmnts. The consultant in opthalmology whom I saw next, told me that his registrar should not have told me I had MS, that their job was eyes and that they weren’t neuros. By that time I had had MRI and second MRI with contrast and nothing showed up. I am still under neuro. Eye consultant said I needed to see neuro and that there was very little the eye dept could offer me, that I would not benefit from glasses and I need only come back if I felt that I needed to. On examination of my eyes in July 2012, he said he thought I had optic neuritis again and prescribed me Methylprednisolone 500mg for 5 days. I took them and felt as if I was going to burst…and had facial flushing. He said to me that diagnosis could be a long process and said that he and the neurologist had been seeing a patient for 6 years. The eye dept felt sure the patient had MS and the neuro sat on the fence and would not give a diagnosis. I have had evoked potentials on my eyes and the consultant at the Hallamshire Hospital in Sheffield, was brought into the room after the tests. He told me I had optic neuritis. I asked him did he mean I had it now or did he mean I had had it in the past and he said both and asked me to contact my neuro urgently. I rang the neuro’ s secretary as soon as I got home as instructed. The neuro rang me back and said he did not agree with the evoked potentials consultant - that they were just the upper limit of normal. I was then asked to have lumbar puncture which I refused and I will not have one ever… I am too afraid of the process and no matter how anyone tries to reassure me I will not have it. Anyway my neuro said I might have neuro myelitis optica and sent me to another eye consulant who ran a clininc along with another neuro. That was not too helpful as at the end of the consultation the eye lady asked me if I had tried glasses! I had a further appointment at same clinic with a consultant neuro opthalmologist who told me I had Utoff’s sign - not sure what that means - and thta he thought i probably had had bouts of optic neuritis in both eyes. I see him again on Dec 12th (2013). On holiday I could not see colours properly - the terracotta tiles on the patio looked washed out when I looked with my left eye and normal colout with my right, Also when we went out in the evening in sort of dusk to darkness my vision was terrible and I felt as if I was looking thru a steamed up window. I am writing this today because my sight is now normal - I mean no loss of colour orf the steamed up thing, but I sm not seeing properly …things are a bit blurred. I am told I dod not have neuro myelitis optica as a blood test can apparently rule this out and I have had it done - so I await my eye appointment which I have been given as I rang them and told them my symptoms. I also have trouble with both arms - stiffness and pain- hurts to touch my skin on my upper arms and can’t turn over in bed without pain or fasten my bra or do back of my hair or pull up pants - nothing that needs me to raise or put arms behind my back. My feet apparently have a Babinski sign - not sure what that is either. Has anyone had these eye symptoms? Also if I stand or walk for any length of time I get tingling and pain in my legs - especially the right one and numb feet are there most of the time. My bum gets tingly when I sit down and I am almost incontinent of urine - this is managed with tablets - Vesicare from my GP - and pads and if I know I am going out I try not to drink much and it makes me terrified that I will wee myself in public. My husband is not terribly sympathetic and I just wish I knew what was wrong with me. I am getting DLA at the lower rate for both mobility and care. I daren’t tell them I am worse as not you have to claim this PIP thing and I am afraid in case they stop it altogether as it is a great help to me. I was made redundant from my job in 2010 so need the extra cash. My husband is a great walker and always wants to walk everywhere and I simply can’t do it so we take the car and he is grumpy. So sorry for the long post - I am just fed up of waiting to find out what is wrong and in the meantime my eyes are geting worse and I struggle to red even with great deal of magnification. Anyone else had these eye things? Appreciate any help you can give. First post on this site - will never do a long one like this again…that’s a promise! MARY

Hi Wheeze

I have recently returned from a holiday in LAnzarote. I saw optician in Dec 2011 who said she could not prescribe any glasses foe me & referred me to hospital. SHe said my eyes did not work together and said, if I was a driver, then I would have to give up my license (I don’t drive). Anyway after loads of tests at Barnsley hospital I was told by the opthalmic registrar that I had MS. I had various eye scans and at the end of the appointment he showed me a piece of bright red card and asked me to look at it - one eye at a time. The card was much less bright when I looked with my right eye.I got further appointments with his department and also neuro apptmnts. The consultant in opthalmology whom I saw next, told me that his registrar should not have told me I had MS, that their job was eyes and that they weren’t neuros. By that time I had had MRI and second MRI with contrast and nothing showed up. I am still under neuro. Eye consultant said I needed to see neuro and that there was very little the eye dept could offer me, that I would not benefit from glasses and I need only come back if I felt that I needed to. On examination of my eyes in July 2012, he said he thought I had optic neuritis again and prescribed me Methylprednisolone 500mg for 5 days. I took them and felt as if I was going to burst…and had facial flushing. He said to me that diagnosis could be a long process and said that he and the neurologist had been seeing a patient for 6 years. The eye dept felt sure the patient had MS and the neuro sat on the fence and would not give a diagnosis. I have had evoked potentials on my eyes and the consultant at the Hallamshire Hospital in Sheffield, was brought into the room after the tests. He told me I had optic neuritis. I asked him did he mean I had it now or did he mean I had had it in the past and he said both and asked me to contact my neuro urgently. I rang the neuro’ s secretary as soon as I got home as instructed. The neuro rang me back and said he did not agree with the evoked potentials consultant - that they were just the upper limit of normal. I was then asked to have lumbar puncture which I refused and I will not have one ever… I am too afraid of the process and no matter how anyone tries to reassure me I will not have it. Anyway my neuro said I might have neuro myelitis optica and sent me to another eye consulant who ran a clininc along with another neuro. That was not too helpful as at the end of the consultation the eye lady asked me if I had tried glasses! I had a further appointment at same clinic with a consultant neuro opthalmologist who told me I had Utoff’s sign - not sure what that means - and thta he thought i probably had had bouts of optic neuritis in both eyes. I see him again on Dec 12th (2013). On holiday I could not see colours properly - the terracotta tiles on the patio looked washed out when I looked with my left eye and normal colout with my right, Also when we went out in the evening in sort of dusk to darkness my vision was terrible and I felt as if I was looking thru a steamed up window. I am writing this today because my sight is now normal - I mean no loss of colour orf the steamed up thing, but I sm not seeing properly …things are a bit blurred. I am told I dod not have neuro myelitis optica as a blood test can apparently rule this out and I have had it done - so I await my eye appointment which I have been given as I rang them and told them my symptoms. I also have trouble with both arms - stiffness and pain- hurts to touch my skin on my upper arms and can’t turn over in bed without pain or fasten my bra or do back of my hair or pull up pants - nothing that needs me to raise or put arms behind my back. My feet apparently have a Babinski sign - not sure what that is either. Has anyone had these eye symptoms? Also if I stand or walk for any length of time I get tingling and pain in my legs - especially the right one and numb feet are there most of the time. My bum gets tingly when I sit down and I am almost incontinent of urine - this is managed with tablets - Vesicare from my GP - and pads and if I know I am going out I try not to drink much and it makes me terrified that I will wee myself in public. My husband is not terribly sympathetic and I just wish I knew what was wrong with me. I am getting DLA at the lower rate for both mobility and care. I daren’t tell them I am worse as not you have to claim this PIP thing and I am afraid in case they stop it altogether as it is a great help to me. I was made redundant from my job in 2010 so need the extra cash. My husband is a great walker and always wants to walk everywhere and I simply can’t do it so we take the car and he is grumpy. So sorry for the long post - I am just fed up of waiting to find out what is wrong and in the meantime my eyes are geting worse and I struggle to red even with great deal of magnification. Anyone else had these eye things? Appreciate any help you can give. First post on this site - will never do a long one like this again…that’s a promise! MARY