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I have no experience of Optic Neuritis that I can share with you.
I just wanted to clarify the steroid treatment. Steroids aren’t the quick fix. Yes, they can have an immediate high, followed by a crash, but they will be working for you over the next 6 weeks or longer. This fits in with your timescales for the improvements that you experienced at the end of July.
Remain positive that things will improve – tomorrow’s always going to be a better day . 🙂
Thanks for your reply – didn’t realise the thing about the steroids, when I was in hospital it seemed that all the doctors I saw were expecting a quick fix with them!
I am remaining positive that my vision will improve one day, and as long as my other eye is good I can get by just fine with day to day life. 🙂
I too, like John, have never had optic neuritis, but have had a couple of friends who have – and in both cases (and they didn’t sound as bad as yours – they only had blurred vision), it took months and months to get better. So give it time.
I know I really get impatient with the loooong recovery post relapse. It helps me (and it may help you) if I think about it as a burn on my arm. If I burn myself on the oven, it takes a good couple of months for the thing to blister, scab, (scratch-scab-scratch-scab), red tender skin heel and then heel over. But even then it will be pink for months and months. It takes YEARS for the scar to fade. So I think of scars in our brain and spine like that, and then feel less stressed about it taking so long.
I like that analogy, it certainly feels very accurate! I’ll just have to be patient. 🙂
That is exactly how my MS all kicked off, my left eye hurt, went fuzzy then went totally blind and then I was in hospital!!
I cant remember how long it lasted exactly, but I do remember that when my eyesight started to come back my colour vision wasnt as strong in that eye. And it did start to go fuzzy again some months later, so maybe it never went away all together but I didn’t notice!?!
Anyway as MS is so different for everyone I guess recovery time for relapses are too, so try stay positive and remember Patience is a Virtue! 😛 You can do it! xxx
Thanks for sharing, must have been very scary for it to be your first symptom! Nice to hear that your vision recovered though.
Thanks for the kind words of encouragement! 🙂
I was set on the path to diagnosis following some blind spots in my vision in my right eye. That only lasted a few weeks but then, after various other symptoms, the optic neuritis returned; although worse than before. I could still see out of my right eye but things appeared a lot darker and the blind spot was much, much larger. Also, the colour vision in that eye had really reduced and also a little in my left eye. After about two/three months my vision has pretty much returned to normal, the only time now that I notice it is on a back-lit screen such as a computer with similar colours in close proximity or the back-lit Kindle, things are just a little harder to discern. Hardly life affecting and I’m just glad to have my vision back!
As has been said above, patience is key here and not worrying about it. I know that’s far more easily said than done but there’s nothing worse for MS than worry and stress in my experience. My neuro told me steroids were like a “fast-forward” for your symptoms, helping things run their course (whatever it may be) more quickly. Hopefully your vision will improve as mine and k*s has, I’ve also spoken to a few people when I’ve been for treatment who have had optic neuritis and they have all improved so there’s definite cause to keep optimistic!
I am still recovering from Optic neuritis.
My vision went very blurry the beginning of November, saw a doctor who gave me 3 days of Methylprednisolone and two weeks of stomach lining pills and my vision got a lot better after two days of the steroids!
My vision is about 90% better not as good as it was before but that is normal all it is, is the colour sharpness but everyone is different.
But a doctor got in contact with me about a drug trial for Optic neuritis and I am currently taking amiloride or a placebo, which is meant to help thicken the nerve to limit the damage after an attack.
It’s nice to hear of people getting their vision back. I do my best not to think about it too much, just keeping my fingers crossed. 🙂
Mines started the same as yours lost my vision on my right eye on 7 september 2012 got dx on 22 October 2012
To this day I Still can’t read any of the letters on the vision test and see any lights.It’s been along time and now have double vision sometimes on my left eye
The ‘first’ symptom I had was an Optic Neuritis. Had 5rounds of some cortisone derivative steroid for treatment and took me about 5to6months to ‘recover’ so to say. In the end I recovered 80% of my eye sight from the affected eye but when I get tired, am too stressed or there is some heat I gradually loose definition from that eye.
One thing I can advise u and anyone else having a relapse its to stay away from salty foods/pork meat and to eat as much papaya/black beans as possible. =)
Thank you for your suggestions, I will keep them in mind! Hope I can recover that much vision, I would be happy with that. 🙂
I went to the neuro-ophthalmologist in August and he told me my vision was just always going to be a bit bad and there was nothing we could do. It was very disheartening and disappointing. And then within two weeks from that appointment I had my full vision back. It could happen to you too! 🙂
That’s great to hear, it always nice to be able to prove the doctors wrong with something like this. 😉 Keeping my fingers crossed!
Hi Feloreena. Optic Neuritis was the symptom which led to my diagnosis, and I have had 3 attacks of it so far (within the space of 2 years). I had a very similar experience to @kirstyscotland8 in that the ophthalmologist seemed to think that my vision would not recover very much, but I’m glad to say that it has recovered LOADS! Time will only tell with these things it seems, but I think that you should stay positive and hopefully you will recover most of your vision too. It took approx. 6-7 months for my vision to recover to it’s current state (only probs I am left with are slight blurring and slightly reduced colour definition from the left eye), so stay positive honey. It can happen 🙂 x
Thanks for sharing Ange! Lovely to hear of your recovery and thanks for the kind words. 🙂
hi ive had optic nuritas for 3 months now and it has improved but its not back to what it was 🙁
i wasnt able to take steroids for it as im diabetic and id have to have been admitted for a week as it would have sent my sugars mental 🙁
My diagnosis came about after getting optical neuritis so I know what your going through.
Unfortunately my left eye sustained what appears to be permanent damage to the nerves so I too am lumbered with limited vision on my left side.
I guess I’m grateful really that it is only the one eye that is so far thus damaged, to lose both would be of course, catastrophic, life changing.
It seems steroids are the only treatment they can really rely on for this type of condition & they do sometimes yield very high results it would seem.
I think the main thing is not to worry too much about it at this stage. You have been given an initial diagnosis of ms which in itself is a lot to take onboard but your not alone so don’t panic.
I was lucky to find a site like this I think, so many of them are just run by advisors & not coordinated by people who actually have ms as this site is so take courage in that your not alone & always people here will help if they can.
I don’t actually write on here very often these days but just coming & reading the posts sometimes can make a lot of difference to how I am feeling & a little more hope settles in.
All the best to you…
hi,optic neuritis is how I discovered ive possibly got ms.i say possibly due to lumbar punch test results came back clear.i went to bed as normal & woke up with distortion in right eye,no pain just vision cloudy.lasted 6 weeks & went as quick as it came (overnight) looking at peoples posts I suppose im quite lucky as to duration with no lasting effects vision back to normal.hope it clears up soon for you.
I had an episode of optic neuritis as my second relapse back in 1975. I had a course of steroid (ACTH) injections and it cleared up after about six weeks, except that the sight in the affected eye never did return completely and funnily enough, has recently started to get worse. The sight in my left eye is now like looking through a bug screen when I am tired, and I am getting double vision because the muscles controlling the eye’s movement have got weak. But the good news is that it has taken nearly 40 years to get this bad.
Hey, I had my first attack that led to my diagnosis which was optic neuritis in my right eye in March 2013. I lost my vision completely much like you and the hospital told me that they didn’t think I would ever regain sight in that eye because the damage was too severe. However I have regained about 30% vision in that eye. It isn’t a lot but it is better than no sight at all and I am still hoping that it will improve more. The doctors don’t always know everything so stay positive 🙂
I am currently experiencing an optic neuritis attack in my right eye. When I was diagnosed in 2006 it was my left eye that had the optic neuritis. There is still a “spot” missing in that sight. Now my right eye is very blurry and when I workout at the gym it gets so bad I can barely see form the right eye. It gets better when I am less heated up or stressed but it has not cleared up for several months now. I am scheduled to go in for stem cell replacement and will post the results. Hopefully that will reverse the vision issues. The best thing you can do with this disease is stay positive, set a goal of some kind to achieve and live a lifestyle of health & fitness. Visit my website to see what I am doing to fight MS and help others with MS nationwide live more productivelives : http://www.msfitnesschallenge.org.
My story is quite similar to yours, I had some pain in my left eyelid in May 2011 and after coming back from a holiday to Italy saw a doctor who diagnosed optic neuritis though was never given anything for it. I think all eye symptoms I’ve had have taken the longest to recover, I’ve had double vision (diplopia) and up/down jerky eye movements (nystagmus). Didn’t have any steroid treatment for any of them, they all did get better on their own though so least there was a positive to it. I can say be patient but that won’t make it any less irritating so I’ll just you hopeful wishes 🙂
Hi feloreena I was dx with RRMS in dec12 after yet another relapse. In June13 I had my 1st relapse of optic neuritis and my vision was still totally blurred at a follow up eye hospital apt in Sep and tests showed it being worse in Dec where I was told it was a separate ON relapse. I should have realised this due to the eye pain 2 weeks earlier along with not feeling right. My neuro doc prescribed my a course of intense steroids. These did make me feel a bit more ‘normal’. My vision still shows no sign of improvement, so it’s now 7 months of only having 1 good eye. It has been extremely challenging and frustrating but I will not let it get me down plus there are always different ways and approaches in doing things so I look at it as a new learning experience. On tues I have a double apt back at the eye hosp and am expecting an MRI apt. At the moment I do not take any DMD’s whether my neuro doc will suggest I do Who knows? Keep staying as strong and positive as you can and remember that there are others out there that do understand what you are going through physically and emotionally. Best of luck, Lucinda 🙂
Hey, I had dipolia (double vision) which lasted 15 weeks the both times I’ve had it also this was my first attack leading to my ms diagnosis and it attacked the same eye steroids never worked for me I took them but I think the eyes hopefully heal from a attack there selves, keep positive and Iam sure it will repair in its own time x
Optic Neuritis was my first major MS symptom. When I went to the Dr to get a referral to a neurologist my blood pressure was high, cause I couldn’t see and was freaking out, so they treated me for that first and then told me they thought I had a detached retina. I fought this, I kept telling them it was ON and I thought I had MS. By the time I saw the neurologist and was then sent to a neuro ophthalmologist it was too late for streiods. I am legally blind in my left eye. My eye hasn’t gotten better, been a year and a half. I’ve adjusted to it although when I trail run my depth perception makes me a little wonky. My Optho said had I gotten in to see him sooner he could have gotten me on steriods ASAP and I would have slowly improved. I think the early detection and steriods are key. Give yourself time to heal, I’ve been told it can take a year to see major improvement. My fingers are crossed for you.
Sorry for ‘neglecting’ this thread! I’ve been very busy recently and haven’t had much time to be online. I hope to more active from now on.
Thank you very much to everyone who has replied and shared their story, it’s very helpful to read through them all. 🙂
I’m still staying positive, and hope others that are still recovering from Optic Neuritis or any relapse are too!
Optic Neuritis in left eye is how my MS roller coaster all started, Six months after it striked in my right eye on my 23rd birthday so will alway remember the day. Over the next week it deteriated to light perception in both eyes. It took a few weeks for me to regain rasidual vision. My attacks were very bad and had caused a lot of damage to the optic nerve and left me Severly Sight Impaired(Blind)
Everyones attacks and recovery are different. I was not lucky enough to get steroids but i did feel i got an early diagnosis. Ive since turned this negative and life changing event into a positive and im now a Rehabilitation Worker for people with sight loss. Its the best.
Your not alone feloreena and there is loads of help out there if needed but fingers crossed that things are just taking a little longer to recover, really hope all goes well
Rich Richardson x
Thank you Rich!
I’m sorry to hear that your Optic Neuritis was very aggressive, but your rehabilitation work sounds wonderful and it’s really nice that it’s led to positive things. 🙂
My recovery is slow as well! I started out with eye pain in my right eye on January 19th. A few days later, I was completely blind in that eye. It’s been almost 3 weeks since I finished the IV steroid infusions. It’s now March 4th and I have about 50% of my vision back, but it’s still very dim and very blurry. I spoke with the neuro-opthamologist today… he said most people get most of their vision back, but there’s no good way to tell if I’ll recover fully. I hope to continue to heal!
Feloreena- how are you doing now?
Hi @dianade2 and @feloreena – Likewise! Optic neuritis was my first symptom that led to an MS diagnosis. Although, at the time I was working full-time and at Uni part-time. During my exams at Uni, I found it difficult to read the time, but this was just short-sighted vision. Then later the same year I noticed that, if I shut my left eye the colours where dim, and everything was blurred. But I never really noticed pain, so it took a couple of months to act on it as I thought if was just Uni and work stress, and had my eyes checked that year. So, I never had meds to help bring the sight back.
I still have blurred central vision with dull colour in my left eye, but make sure diet and exercise is just as important for eye health.
sorry to hear about the optic neuritis. Just my thoughts and experience. Similar to a few other members Optic Neuritis was the symptom which led to my fairly swift diagnosis. Prior to that had encountered problems with my legs, numbness, pins and needles, losing balance. All medical staff were baffled (had lots of tests carried out (reflexes, muscle strength etc.). Then three months or so later , no pain nothing, just woke up one morning absolutely exhausted, just could not get out of bed (very unusual for me)! Eventually managed to crawl out of bed around 1pm (luckily was my week off and I was at my mums. I just thought I was exhausted from my work load). I kept rubbing my eye, thought I had some sleep/discharge in my eye. Went for a shower and pretty much knocked everything over! Colour perception was going, all the beige/white toiletries had blended into the beige colour of the bath/tiles. A few minutes later I looked at my hands…..just fady blurry blobs, I couldn’t see!
Later that day I was diagnosed with optic neuritis (after much insistence on my part that there was something definitely wrong & I couldn’t see. The eye specialist at hospital told me he could see nothing & I had probably scratched my eye with my contact lens, so just to stop wearing them for a few days!! He tried to send me away, saying it was nothing. Despite me repeatedly telling him I never over wore my lenses, I took great care of my eyes etc. He was having none of it and was very patronising and dismissive. I was about to leave, just stood at the door and burst into floods of tears and pretty much yelled at him ‘ look my R eye is usually my stronger eye and I cant see through it! How can it be a contact lens scratch, I can see better through my L eye (have a very lazy weak L eye) and everything is going grey, I CAN’T SEE! At that he called me back and got out the Ishihara Test (colour blindness tests). Naturally I couldn’t see the numbers (prior to this I always could, as use them in my job to test for colour blindness). It was after this he diagnosed me with O.N. I was told it would progressively get worse over the next few days/weeks which it did. I chose not to take steroids. Boy was it a slow recovery process. Off work for nearly 8 months. What I did learn though was that worrying about it and constantly testing my eyes (covering my L eye and comparing to vision in R eye etc.) was not helping. I eventually stopped fighting it. My then fantastic MS nurse told me to stop fighting MS and have complete rest (which meant no TV, reading, music anything. Just shutdown and let my brain rest as that would help my eyes heal? I allowed my body to completely shut down for at least a few hours every day (had chronic fatigue as well) and slowly just stopped worrying about my eyes. It took about 8 months for about 70% vision recovery, ensuring I had plenty of rest. I used to still get dazzled by sunlight and could rarely make out features if someone was in sunlight. I then kind of forgot about it, went on a looonng holiday and it was a few months after that that I realised blimey my vision is pretty much back! It happened when I had stopped worrying about it. The anxiety certainly made it worse. Slowly (almost two years) but surely I got there. I stopped reading & watching TV as I didn’t want to strain my eyes (they would hurt/feel exhausted after a few minutes of reading or watching telly). When I went for my last eye appointment (two years after the O.N.), the specialist was actually shocked. He asked me what I had done…….. as it was short of a miracle that I had 99% recovery of my vision 🙂 5 years on, night vision is still not too great, glaring from the lights of other drivers can be a bit dazzling and definition/outline affected in bright sunlight.
So hun I appreciate we are all different and symptoms/recovery is unique to each sufferer, but do try to rest your eyes and avoid straining them. If they hurt, then just close your eyes and have shut down (within reason of course depending on where you are)! I know easier said than done, but try not to worry too much, as stress and anxiety can make it worse (for me it certainly did). Apologies I have gone on a bit, but took me straight back like, it was yesterday. Wishing you a great recovery (note I didn’t say speedy, like JasFromTas said, scars takes time to heal. In the meantime stay positive xx Oh nearly forgot, I started eating a handful of nuts then as well as per advice from my MS nurse.
Hi I have just joined this forum this week. I had optic neuritis in 2007 and it was my first symptom too. Ms was not diagnosed until last year though so it’s been quite the roller coaster. In relation to the optic neuritis it was a slow recovery. It took over a year for my sight to return to normal but it did. Still gets a bit weak but vision is good.
Hi was dx in March 2007 after a bout of optic neuritis. Unfortunately I have residual damage which will probably always be there! However thankfully it is only in my left eye and I do have some vision although blurred.
Hi Kazzy just joined also this week. Was dx in 2007 following optic neuritis.. LP… mri etc. I had been referred to neuro by eye surgeon following an mri he examined. While all this was happening my waters broke at 25 weeks and I was transferred to National maternity hospital. Baby arrived on 19th March 2007, at 26 weeks gestation weighing a mere 770 grams and my dx came on the 20th March 2007!! So to say it was a double blow is an understatement!! However I was so concerned for baby that I didn’t have time to register all that was going on until much later. I did however make a promise to my little bundle that we both had a lot of work to do and if he did his part I would do mine!! Thankfully he is now a healthy seven year old who is so full of life xx he is such a little fighter and is my inspiration along with his two older brothers!
Hi, my left eye was attcked by neuritis in Jan 2014. It started with pain in eye and acute headache. And one day just dropped vision. After eye chkup and MRI it detected optic neuritis. I did not take any medicine or steroid. My doctor mentioned it might take 6-8 weeks. By march my vision started back to normal still not 100% though. But now I have been feeling headache and pain again this time around in both eyes. Has this happened to anybody? Am I getting neuritis in other eye too?
Hello to Everyone,
Ive recently been diagnosed with ON which began in mid February. One day I couldnt put on my eye makeup with my left eye closed. Tried different contact lense perscriptions with no correction, 2 different eye Dr.’s and finally early April, a retina specialist who referred me to Optho- Neuro. MRI shows no lesions. Its been 10 weeks now and my vision hasn’t improved at all. Dr’s said it was too late to start steroids – I guess if my original eye Dr. had picked up on it early on I could have benifited from steroids. So what’s next? Just sit and wait???? I’ve read that B Vitamins/Thiamine are helpful- any thoughts are appreciated!
@mamalee , welcome to the forum.
I see that you are “I might have MS”, which poses the question, are you under the Neurologist now and are they investigating for you.
Unfortunately, MS symptoms can be present in all manner of medical conditions, so it is important that someone tries to get to the bottom of what’s going on. The absence of visible lesions is not unusual.
But, any MS symptoms are the body’s way of asking you to slowdown a bit. You need to take more care of yourself and try to look after Number One. So, if you are overdoing it in anyway, then slacken off a bit.
There are various schools of thought about vitamins. Deficiency in D3 and B12 are things to check. But a healthy, balanced diet should provide the nutrition you need.
And, try not to worry/stree. Any condition gets worse when we allow ourselves to get stressed. Stress takes brain power, which is best given over to the task of making us better.
Hello, I’ve been diagnosed with Optic Neuritis since 2001. I’m currently in Recovery, been on steriods & the Oral. Its been a month now. This is my 4th relapse. Had 6 lumbar punch, numerous blood test. 2012 had severe symptoms of MS. All test done bt nothing found. This time booked myself into hospital lol. Now its the waiting game. I do consider myself very lucki as I recovered most of my eyesight. Right eye is damaged bt considering all the attacks. Waiting on my app in July for my MRI. I’m all the way from South Africa, Cape Town were there isn’t much support. Its very discouraging & lonely as no1 understands what I go through. So glad I joined this site. Sorry for the moaning….. 🙂
Hi im new here and just wondered if anyine has any idea what could be the cause to optical nuritis in a child as my 12year old daughter has just come out of hospital with this. She had 5 day treatment of the iv steroids and has slight vision now which is better than the complete darkness she had. Im wondering what are the chances of this happening again. Thank you
Hi @chloesmum , I can see that you’re understandably concerned about your daughter, hence your question.
Regretfully, with MS, which is obviously on your mind, there are no definites and we all have to live with that uncertainty. But, nobody knows what tomorrow holds, so we’re no worse off in that respect.
But, the symptoms of MS, e.g. Optical Neuritis, are also present in a truckload of other medical conditions from a simple vitamin deficiency upwards. That is why MS can be notoriously difficult to diagnose.
I should imagine that a Neurologist is handling your daughter’s case, so bear with them as they consider the results of their tests.
Whether it’s MS or some other ailment, we can try and support you and your daughter, whilst the investigations are underway.
The thing to do is try and create an atmosphere of calm for your daughter. The brain works better at fixing us if it doesn’t have to contend with worry and stress as well.
Good luck to you and your daughter.
Hi guys, also new here
Im 20 y/o and had an attack of optic neuritis that began about 2 weeks ago. I don’t have MS and have experienced no other MS symptoms at all but going for an MRI in the next month as fully aware that I may be at risk as I get older, especially due to my gender, age, where I live etc. However my question is also concerning a slow recovery from ON. I am going on holiday next week and was told my sight should take up to 6-8 weeks to recover, however could be as little as 2. Luckily my ON isn’t too bad, I went completely blind when I first had it for about an hour (it was really sudden) but then it immediately recovered and it has been reasonably blurry, colourblind etc ever since, but not awful. What I have noticed though is that on some days it is almost completely back to normal, then other days it is much worse. I was told it wouldn’t do this and would remain stable until it recovered but this doesn’t seem to be happening. Did anyone else experience this? I also wonder whether it is certain things that make it worse from day to day eg using the computer or reading because I tend to do these things a lot. If so would you advise cutting these down before I went on holiday to speed up recovery? I also keep hearing people talk about steroids but no doctors have mentioned these to me?
@xaluar , the MRI scan will provide a bit more information to aid a diagnosis. Unfortunately, symptoms of MS are present in other conditions too, so getting to the root cause can be complicated.
High dosage steroids can be prescribed in some cases to expedite the body’s recovery.
In your case, it seems that recovery is under way. But, you need to allow it to happen. So, resting the eyes from time to time would allow the brain to concentrate on repairing the damage.
It can all be a bit of a balancing act, finding time to recover, whilst going about the activities of the day.
Just be kind to yourself whilst this is ongoing and see if that can help things improve.
I was diagnosed with optic neuritis in June this year. I noticed my vision in left eye was slightly blurred on a Friday so made appointment with optometrist on the Monday. He did routine eye exam but didn’t really notice anything major. On the Tuesday I saw my doctor who did a field of vision test and noticed my pupils were not responding as they should so he referred me to an opthomologist. The following morning my sight in left eye was pretty much non existant so I called my doctor and he made an emergency appointment for me with the opthomologist that day. The opthomologist diagnosed optic neuritis and made appointment for me to have an MRI of brain and orbit the following day. The MRI revealed it was optic neuritis and I have one brain lesion. My sight worsened for the first 3 weeks and then started to recover. I’m now week 6 and it appears to have plateaued but I know it can take 6-12 months for maximum recovery. I had no steroids or any other medication as the opthomologist said it won’t change the outcome it will just speed up the recovery- but side effects are common. Since then I have seen a neurologist who specialises in MS and have had MRI of spine and spinal cord, thankfully it have no lesions there. I’ve had a multitude of blood tests to eliminate any other possible causes of optic neuritis apart from MS.
I’m very fortunate to have had access to such great doctors who’ve been able to see me at short notice.
My sight in left eye is now at about 50% and I know I have to be patient. I’m thankful for how far I’ve progressed so far as I know it could’ve been so much worse
Just to add some information for anyone reading this thread who has symptoms – my first attack was a strange flooding of light in my eyes, like I was looking at the sun. I went to lots of opticians, none of whom recognized what was wrong with me and one told me I had mental health problems! I took to wearing sun glasses and after about three months it went away and has not returned at all. Best wishes to all!
After my ON that I believe had startsd in September/October last year my vision is now amazing – i don’t remember it being so good. I think I may have been suffering vision issues for about 4-5 years and wearing glasses which were totally unnecessary. I am no longer wearing glasses which is a shame because I liked how they looked on me. Hope I don’t have any more double vision or ON in the future.
Good luck Feloreena with your recovery.
My god! I only just found this site !! My ON started 22/12/13 . I’ve still got it too (joy) firstly it itched,then it felt as though I had an eyelash in my right eye. Then, gradually lost sight from the right hand side slowly, like a grey curtain being pulled across. Next,
Total darkness(deeper joy) oh,and the constant stream of tears stinging their way out . My left eye was perfect while the right could only make out silvery outlines of “THINGS” oh how I longed for light in it.
I woke one April morning and god said “let there be light” n there certainly was,nothing else. No colour,no shapes, just light.
So now it’s Thursday 26th of February 2015 and I now have feint colours and a watery outlook no focus and still stingy tears while typing this. Need to go lay down and cry for the billionth time. I’ve had examinations,been put on Rebif DMD and have had MS attacking my left leg ,arm and hand. I hate needles and this electric injector takes no prisoners, but it’s helping I think.
Sorry I’ve rattled on, I could keep going but, I think you all know what it’s like . Hope all find solice in the fact your not alone. Oh! My diagnosis of MS was in 07 after I unknowingly let my bladder empty in a half crowded pub… No Joy !
Regards and best wishes to each and every one..
I was diagnosed with ON in my right eye (blurred vision, eye pain, some color loss) a few weeks ago and a recent MRI indicated lesions in my brain, though not spine. The doctors aren’t sure about MS, but in any case, had me undergo 5 days of intravenous steroids about two and a half weeks ago. I didn’t think my vision was improving following the treatment, though the pain did go away. Then I retook the visual field exam last week, which suggested my eye was improving. However, this week my vision in my right eye seems a little worse, and some eye tenderness has returned. Has anyone else experienced a worsening of symptoms before improvement? This is my first experience with ON and I’m quite scared, even though I know that many people have suffered worse cases of it!
Thanks so much, so happy I found this thread!
I had total loss of sight in my right eye for around 3 months , if you have read my message above you will know most of the rest but it will ease as mine is still. I have now some colour back and blurred vision but it is returning. Do not be scared, it will return .
I’m told it will not be 100% again but it will return..
Keep your spirits up
I was diagnosed with optic neuritus in January 2013 I lost the vision in my right eye and very blurry in my left. I was sent for a CT SCAN and a MRI unfortunately in 2015 I still haven’t regained the sight in my right eye each day is a struggle but I push on my doctors are not willing to do much about this. So am going to see a specialist.
I was diagnosed with Optic Neuritis in October 2012. I was sitting in a bar with some friends and my right eye got sore very quickly. I thought I had a foreign object in it. By the next day my vision was cloudy and sore. I was flying back to the UK from Oregon and had to drive home from London. I remember doing this with cloudy vision in right eye and thought that it would clear up in a day or two.
A few days later it hadn’t and I mentioned it to some people at work. I remember them looking quite worried at the time. I went to my doctor, who then sent me to hospital. The eye clinic did a test and sent me home with no clue as to the problem. Two weeks later it had got worse. I remember that if I looked at someone’s face with the bad eye, I could only see their eye brows and hair. Their other features where just blur.
I went back to the clinic and this time things were very different. They looked quite concerned and took me for a CT scan and then informed me that I was to be admitted to a ward. After three days on the ward, being given a drip and an MRC scan, they informed me that I had Optic Neuritis, which can be a sign of MS. I must admit that it was a shock. On a follow up visit they informed me that I didn’t have any legions on my brain but I had lost about 25% of my Optic Nerve in my right eye.
For the next six weeks I had colour blindest to red. I didn’t drive as I couldn’t tell when cars where braking. For many months, the eye was sore and the headaches were many. The vision in the eye got worse in hot conditions (e.g. having a shower) and I found it difficult to concentrate.
Every 6 months or so, it seemed to be a little better than the last six months. I was recovering.
Now 2½ years later, the good news is that things have got much better. I think the headaches were caused by the brain adjusting to the new signals that it was getting from my eyes. The right eye has recovered to about 90%. In fact, I hardly notice it in normal life. The other impact is that I get tied more quickly than I did before and my eyes are more sensitive. This could be down to the amount of work the brain is doing to adjust signals. The brain seems to have an amazing ability to rewire itself, it just needs time.
For me there was light at the end of a very long tunnel. I’ve had to make some adjustments to my life and know my limitations, but life is good and no signs of MS yet. I know this could change, but I’m trying not to spoil today, thinking about what might happen tomorrow.
I hope my story helps. Good luck.
I had Optic Neuritis once.
It started as a blind spot in the centre of my eye that got larger over a couple of weeks.
Stayed the same for a few more weeks then cleared up slowly over a few months.
I’m left now with some loss of colour vision, but it hasn’t returned in over 10 years.
How is your vision now? It’s been six months for me and still no improvement.
I have had no discernible improvement now 3 years into my ON. Left eye, very blurred vision. Often painful – sometimes a dull ache sometimes a sharp needle pain.
Pretty fed up with it now but keep hoping and believing every day that it will improve
@fredwnelson is your eye pain pain when moving your eye (like when optic neuritis is active) or is it a constant pain?
I had ON 12 months ago and it did keep improving over that period but will never be 100%. I’ve had continual pain over that period (not when moving my eye) and finally just had a possible diagnosis. It appears I have poor oil coverage on my eye which causes blockages in the ducts and then they trap bacteria. The solution is quite simple- hot compress or keep face under shower for longer and gently massage eye lid and below eye and then wipe along lashes with optic cleansing pads (available at pharmacy) and then throughout the day use really moisturising eye drops. I’ve only been doing this for a few days and already I’ve noticed a difference. Hopefully it will continue to improve. I hope this helps you as I know how hard it is when your eyes are in so much pain all the time. Your optometrist or eye specialist can look at the oil and tear film on your eyes.
l had exactly the same experience .. but less severe.. did not go blind probably it was my first relap. i was diagnosed in May and my eye -left eye recovery took about 1.5 month.. please do not cover your eye too long because it causes infection. the eye cleans itself by blinking.. did not know it was so important. then l was by an optimologist who confirmed that some people do go completely blind and regain their vision…
what i realized is that having a good .. best neurologist team is the key…
Thanks AussieKylie and zulfihan for taking the time to respond – very much appreciated
I find my worst experiences are when I am tired or anxious – blurred vision gets worse as does dull pain in both eyes
Need to go see neurologist again soonest as no improvement in 3 years. Unfortunately I was not impressed with my first experiences with neurologist so have been reticent about returning
I think I was very lucky,
the only lasting effect’s for me after it cleared up was a slight loss of colour vision
and that has improved over the last 8 years
Hi @asina and welcome.
I’ve corrected your weblink (it needed a space after it!) but, the website does state, “in the absence of neurological disorders…..”
Well, on this forum, we normally see Optic Neuritis caused by a neurological disorder, i.e. Multiple Sclerosis. So, it appears that this treatment isn’t available to us.
So it’s been. 2 year’s and 8 months and the eyesight in my right eye hasn’t returned their is no hope of it returning and no solutions being given by doctors I have no field vision just the one eye. Life is a struggle but you push through
I’m curious for those that haven’t got your vision back of you were in steriods
When I was researching a disease of the optic nerve atrophy by İnternet for my father, I found that in this clinic have been people who have recovered from the disease or people who have this illness has been suspended. In the Russian version of this website have been examples of patients diseased atrophy as a result of multiple sclerosis. http://hatmedicine.com/nevsluchaiartrofii. Read English version of the website about examples of patients which cured from the disease. You can write a question in the question to the doctor. They must have complete information about the status of the eye: visual acuity, field of view, the state of the fundus. Thereafter, they provide a promising answer about perspective treatment.
So to a response no I wasn’t given any medication. From my doctors. Since my diagnosis of optic neuter us. I have had problems with my memory but most recently I feel like I have changed by joints ache more but I put this down to arthritis. I was told it be unlikely I’d get MS however I have been feel lethargic. Easily tired joints ache more. But I could be wrong. I took my medication up with a solicitors who told me I didn’t have a case when I told them that I researched it and I was suppose to have lots of meds rapid eye recovery and what not. But case denied. So.I am at a loss. Double bad is that my lack of sight is not even considered a disability .
I filed for disability. I have ON in both eyes. I can barley see while trying this. I I can’t drive or cook anymore. I’m still taking steroids. At this point I don’t think it’s helping. It’s been 6 months and my vision is getting worse.
Can someone please give me some hope that my vision will come back. It’s been 6 months I’m still on oral steroids. The contrast and color vision in eyes are bad.
@jkfamily , can I ask what dosage are your oral steroids?
In the UK, when we are prescribed steroids, to address a relapse, it’s a short, sharp high dosage treatment at a rate of 500mg-1gm per day for 3-5 days. Any lesser dosage is not felt to be worthwhile.
I know in the US that you can be given high dosage steroids and are then prescribed a taper dose.
But, apart from that, you need to be able to give your body the time to recover. Basically, throttle back on all activity where you can…..
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2854944/ Have a look at this page folks. I was diagnosed with this as part of my MS diagnosis,if it helps.George.
@stumbler For 3 days I get lv steriods 1mg then for 10 days I take 60mg of oral steriods. Every time I’m off the steriods my vision gets worse then they send me back to the hospital to get back on the iv and oral steriods right now I’m tapering off the steriods. I’m at 20mg which it seems like every time I take anything less then 60mg my vision gets worse. It’s been six months and my vision is getting worse each month. I have an apt Monday to see if my doctor wants me to stay on steriods or get off of them. Nothing is helping my vision right now but not being in steriods is making it worse. . I can barley see typing this I hope I made sense.
@jkfamily , the steroid strategy seems to be the way to hit it, but you can’t keep throwing steroids at it.
The steroids can only assist your body to recover so possibly you need to give yourself a break, cut down on your activities where possible and put yourself first.
No amount of steroids will help if you’re not able to allow your body to do its bit…….
Three and a half months ago I noticed a slight red hue in my right eye in the evening. By morning my right eye vision was deteriorating. I went to my optometrist who said I had posterior vitrous detachment (the gel in my right eye was detaching but that happens to most people as they age). The next morning I was blind in my right eye. Went to an opthamologist who called for blood work and an MRI. No lesions were found but I did have a high white blood cell count. That was a Friday. Monday I had an appt with an Optic Neurologist who looked over the MRI and put me on steroid pills followed by the IV treatment. They also put me on antibioics. I had a sinus infection which they operated on a month later after I was able to get in to see an ENT. To date I’ve seen very little improvement and am hoping for some kind of insight as to whether or not I will see any improvement or not. I also had a series of blood tests done. The only thing the blood tests found was a possible lupus marker (but I have no other symptoms of lupus). My vision right now is left half of my right eye field of vision is totally blocked out and right half of my right eye is like looking in a very dark room. Initially I had a blood shot eye for about 5 days before the blindness hit. It also felt like I had a hair in my eye the days before blindness hit. I also had 2 episodes of occular migrains causing complete blindiness for 15 minutes to 3 hours (my good eye went blind) but that has not returned in the last 2.5 months. Sinus surgery found an infection close to my optic nerve and they think that was the cause but I can’t find anything that can give me a good idea about what to expect recover wise – or if this is what I’m going to have. Thanks.
I wanted to post a reply to give another perspective, although I’m aware everyone’s experience will be different due to all sorts of circumstances and situations.
On Thursday, June 25th this year, I woke up with a terrible headache above and behind my right eye, with pain worsening on eye movement. The pain lasted and didn’t relent over the weekend, so on the Monday I went to a doctor who thought it may be a migraine, but wanted to refer me to an Opthalmologist because of the eye pain.
The appointment with the Opthalmologist wasn’t going to be until September, and on Wednesday, July 1st, I started developing visual symptoms as well. At first just more of a grey film over the right eye, sensitivity to sunlight/brightness, and some issues with depth perception (could swear cars would hit each other, but didn’t witness any accidents, thankfully!). By Friday, July 3rd, I had a severe blind spot, blurring, and graying of the right eye, with definitely noticeable lack of colour acuity in that eye. I couldn’t want until September for the Opthalmologist appointment, so I took myself off to the ER (I’m in Canada and do not have a family doctor). He thought again it might be a migraine, but wanted to do a CT Scan (which came back showing nothing). He also wanted to refer me to a neurologist.
I saw the neurologist the following Friday, 10 July. My eye had gotten gradually worse over that week, but I didn’t experience complete vision loss, for which I am very grateful. The neurologist took only 10 minutes of tests to decide he was pretty sure it was Optic Neuritis, but wanted a second opinion from a Neuro-Opthalmologist, who I was lucky to see the very same day. She confirmed the diagnosis and both doctors had me referred for an MRI, as well as having me come back to the eye clinic for visual field testing and imaging. I also did the colour/number tests and was extremely slow to see the numbers with the affected eye – though I could still make them out if I tried hard.
The visual field testing and imaging was the following week, and definitively confirmed the diagnosis, along with showing the blind spot in the lower left part of my right eye. All throughout I continued going to work, and while I needed to take more frequent breaks away from the computer to rest my eye, I still managed to continue on with my work duties (administrative work). The pain was managed with Aleve, as I opted to avoid the steroids. I was told they wouldn’t affect my overall recovery, only perhaps speed it up – and that there would be potential negative side effects. This is a decision I am still happy about.
The pain began to decrease on July 17 and I stopped taking painkillers around the 21st of July, which was also when I had the MRI scan.
The following couple of days saw my vision begin to improve, first the blurriness and blind spot improved, and gradually colours began to appear as they were with my good eye. By the end of July, and continuing to today (September 12), my vision is almost 100% improved in terms of actually being able to see. I still notice problems with my depth perception, but nothing unbearable, and things are still slightly dimmed from that eye, but the Neuro-Opthalmologist is happy with my progress and confident that I’ve seen the worst of it (this time, anyway). Follow up visual field tests showed the blind spot to be gone.
My MRI however, showed upwards of 5 lesions on the brain, so I have been referred to an MS Specialist. I have seen her, and she has confirmed that it’s almost inevitable that MS will be the diagnosis – right now it’s a “clinically isolated symptom”. I’m scheduled for another MRI in January, and if that reveals changes in lesions, they’re thinking of starting preventative treatment – whatever that means. I’m trying to remain positive, as I’ve been told that if you have to have MS, starting with Optic Neuritis often means the lesser evil in terms of the way it runs – or at least some studies have shown this.
Sorry this is so long, but I thought it might help some people online who may come across this forum as I have just done, with some extra information or another perspective.
I wont waste words.Chronic headaches. Right eye. Feeling of red hot needle being passed slowly through the optic nerve, for weeks at a time. cured by Amitriptyline tablet every night.
It’s been 6 months for me. I think whatever has been damaged is damaged. I don’t think my vision will come back. I he had optic neirreia in both eyes.
Hi all, and sorry to hear so many sad stories about ON. I was diagnosed a year ago, starting ON full blindness right eye. My vision is now line 2 of sight test, just.
I’m interested in knowing more about multiple ON occurrences and vision risk, especially with respect to getting better DMDs. About to start a new thread on that topic, so please head over and comment.
my last post was April 2014 after I was diagnosed with ON and no lesions on the brain. my 6 month follow up with Neuro-optho was great results – “95”% recovery of acuity and visual field. I was shocked since I still felt that my vision was filmy and blurry. Red and green are still dull.
Fast forward to last month (august 2015) while on vacation I developed severe sinus pain, eye soreness, headache, blurry and felt like sand was in my eye. I couldn’t wear my contacts and had left my glasses at home! The skin on my face hurt at my temples and forehead similar to shingles so my husband (who had had shingles 2 months prior) called Dr. for herpes meds and antibiotics which helped a lot. I had the same symptons prior to my last ON episode. I am beginning to wonder if my ON was initially brought on by Herpes/shingles virus.
I have all of my Dr. apts lined up for the next 2 weeks (ENT, Neuro, Dentist) – will keep you posted.
Hi, I had an ON episode with vision loss and pain on August 26th, 2015. I did the 3 day predisone steroid treatment which only relieved the pain. I have been diaganosed with CIS. The vision in my left eye did not recover, I still have extreme blurred sight with no ability to identify colors. Today I realized as I was driving that I couldn’t even see the brake lights or signal lights of the vehicle in front of me with just my left eye. I am fairly sure I am headed to a MS diagnosis, but only time will tell. Thank you to everyone who posted. Sometimes just knowing I am not alone makes me feel better. (not that I want anyone to experience this). I agree with so many of you who wrote stay positive. It seems to be a powerful tool.
For all of you that have battled ON, I feel your pain. In 2008 my right eye went from a small spot of gray I was seeing in my vision, to no light perception in a two day period. It was several months before they tried the steroids. It’s now seven years later. I have 20/400 vision in my right eye. I take a copaxone injection daily. I’m sure as many of you do, I still close my left eye to judge what I can see with my right eye. After 7 years the doctors tell me that it is not getting better. But I swear it seems to me that at a snails pace my right eye is gaining more vision. I can at least now occasionally recognize someone on television, or identify an object. Has anyone had any experiences where after several years they regained any of their sight?
Hello MSers, I too had an ON episode . It started August 31 2014 in my left eye and it still hasn’t recovered. I went from blurry to full darkness in two days. Now I see out of my left some shapes but very blurry nothing compared to my good eye.
Hi everyone, I’m battling my third bout of optic neuritis right now and have been dwelling on it hard and reading through these posts often to help keep hope that I’ll recover this time around. I recovered fully the last two times and from what my eye doctor could tell this past summer, no optic nerve damage from the last two bouts. To the original poster, has your vision gotten better? I did two rounds of IV solumedrol and two rounds of prednisone taper for 20 days each time after the infusions. I know it can take 3 months to a year. I had a feeling from the beginning that this was going to take a long time. The last one took over a month and the one before almost three.
I’ve had ON 3 times in 11 months. In December 2014 my right eye felt like it had an eyelash in it. A week later it was blurry and VERY painful with eye movement. I thought it was a simple case of over working my eyes in front of a computer. When the OTC pain relievers were no longer working for me, I made an appointment to see my PCP. She didn’t see anything usual, so she referred me to an ophthalmologist. After many hours and countless exams at the ophthalmologist office, I was diagnosed with ON. I went home confused because I had never heard of the eye condition and I wasn’t given anything to treat it. Another week passed and the pain just got worse. At that point I decided I needed to go to the ER, I had also lost my vision, I was so afraid. In the hospital I had an MRI and I was diagnosed with MS. I was admitted and given IV steroids for 3 days. Recovery was very slow, it took about 3 months before I regained all of my vision. After I was diagnosed, I needed to find a neurologist, which I did. My very first consultation with him, he opted against treat me for MS even if my MRI showed 3 lesions, and I was OK with that. 6 months later in June 2015, I started to experience the same symptoms of ON in my left eye this time. I immediately made an appointment to see my neurologist. I don’t think he believed me when I told him what I was feeling. Still, he started me on a 3 day course of oral steroids and ordered an MRI and blood work to rule out NMO. At my follow up appointment, the MRI showed my optic nerve light up, and since the oral steroids did nothing for me, he send me to the hospital to begin IV steroid treatment. It was after the second ON attack that my he (DR) decided he wanted me to start the Copaxone injections, which I am still on. Everything was well, I made it thru the hot summer (I live in Arizona) no more extreme heat, new treatment…..and in November 2015, I couldn’t believe it, OPTIC NEURITIS AGAIN!! I was baffled! And my doctor…..my doctor has no answers. Once again, I was admitted and treated at the hospital. I don’t know what triggers my attacks and I don’t know if it’s another illness that’s causing the ON attacks. My right eye, which I’ve had ON twice is blurry most of the time, but for some reason it’s more so in the evenings and at night.
Hi @bibi79 and welcome.
It does seem that your medical team are not that familiar with dealing with MS. Would it be possible to be referred to an MS Specialist, so they can help you effectively manage this issue? The local branch of the MS Society may be able to advise.
As to what’s causing it, it could be a number of things, but at it’s worse at the end of the day, it could well be tiredness. Although, the majority of members see stress as a major agitator.
I hope this helps.
Just a quick message of hope to all those suffering from ON. I have experienced no less than 16 episodes, plus one loss of vision for 6 months in left eye, plus double vision additionally over the course of 11 years post diagnosis.
I experienced the eye pain which is usually a prelude this week also.
My message is that I fully recovered my vision each time with no residual damage. Please do not give up hope.
One piece of advice is to sit in a dark room, and cover your eyes with a duvet or something similar for a period. Attempt to rest your eyes and refrain from reading as much as possible (I am fully aware how hard this and repeatedly read copious amounts when I shouldn’t have!), and allow nature to take its course. Easier says than done, but unfortunately, unwittingly, I’ve experienced too many of these attacks not to have learned something!
Good luck to all of you.
Its nice to know im not alone. Its interesting reading everyones stories. I was diagnosed with MS, but am lucky enough not to have had an episode as yet.
Im in the same boat as you feloreena. July 2013 lost my vision in left eye. I say lost, probably about 50%. Never came back and told never will come back. I was never given medicine either. No steroids and was told they are not sure what is going on.
Its hard to tell if i have had another episode. I am feeling a pain in my left eye now. But dont know if im tired or stressed. I try not to worry or over think it. I definately dont tamper with it or close my right eye to check if worse. I cant read a letter board as everythings just blurry and colour blind.
i remember when i first got it. i sat in a dark room i closed my right eye and coud see what i could only describe as a smoke floating around.
Anyway, best not to over think anything. Take each day as it comes and try and keep yourself fit with plety of exercise. Have great weekend peeps. Be strong. What you beleive you can acheive.
This is the best thread I’ve found discussing recovery so I figured I’d chime in. Last summer I woke up one day and realized I couldn’t see out of my left eye. A trip to ophthalmologist and a battery of tests left me with suspected optic neuritis. An MRI confirmed but thankfully no other lesions present so at this time no MS diagnosis. I spoke to neurologist and they just suggested follow up. I have had some other troubling symptoms like frequency of urination and urgency so I’m not ruling out MS here at all. I’m back to get another MRI for follow up at one year mark and perhaps other tests. My acute bout lasted about 7 to 10 days at which time I had pain and very hard time making out anything but shapes. It improved after that but the improvement seems to have stalled out after about 3 months time. At moment my left eye, which had the problem, just seems weak. Shadows and glare are a problem, reduced color sensitivity and a general fuzziness to vision although I suppose I am thankful for how much I did recover. Reading a computer screen with that eye is especially difficult. Reading something on paper is easier. As of now the only thing I’m doing is making sure to get plenty of rest, eating well, exercising, taking supplements (D, b12, omega 3), and hoping for best. I think today after doing some reading I’m going to add probiotics into the mix. That is my story. I figured I’d share. I’m hoping I don’t end up with MS, hoping I don’t have any recurrence of optic neuritis and hoping vision improves in left eye even further than it has. I’ll take what I have now if could be guaranteed to not have future attack or other MS symptoms even though it is a rather large nuisance. Best of luck to everyone out there and I’ll report back if anything changes here. If anyone wants to ask me other questions please just get in touch.
Thank goodness for great people who are supporting one another. Brings tears to my eyes.
I’m just joining as I lay awake on a second round of steroid treatments in 3 weeks. This is my first attack which began a month ago with loss of hand and leg coordination, balance, feeling, touch, pins and needles. After an initial diagnosis and one round of steroids, I have now suffered ON with the loss of complete vision in my left eye. Talk about scary and shock. I think I’m getting better after the initial on set a month ago and now I lose vision part way thru recovery! I was admitted to the hospital, had an LP, tons of blood work and now more steroids. We have two young children, and I’m terrified! i started to wear a patch over the left in the evenings and watching tv in hopes that it helps it to rest as the eye gets so tired by mid day. Any other thoughts, experiences on how to help the recovery process?
Hi @msmama2 and welcome.
It’s not easy trying to juggle two young children with the disabling effects of MS. But, given your present problems, you need to try and rearrange your schedules, to allow yourself some downtime to be able to recover. I know this isn’t going to be easy, but you may need to schedule your rest, when the kids rest.
The steroids will primarily address the areas of inflammation that are causing your problems. The steroids will be working with you over the following 6 – 8 weeks. But, you do need to find time to allow your body to recover. Recovery from optic Neuritis can take a bit longer, as has been suggested above. But, never give up hope.
Out of interest, what dosage are the steroids that you’ve been prescribed?
Also, has the subject of Disease Modifying Drugs (DMDs) been raised with you, as a form of insurance for the future?
Hi Stumbler, thank you for such a quick response and encouragement. You’re absolutely right about needing time. I just battle with the guilt and desire to be with the children. How to not tear up when I can’t watch them properly outdoors or paint a picture with them?
The first dose, about 3 weeks ago, was 3 days of 1000mg prednisone taken at home. This Monday, I began methylpredisolone 1000mg through IV for 5 days at the hospital due to the onset of the ON.
Is it a “normal” occurrence to develop new symptoms mid attack?
@msmama2 , you have to be a bit creative and imaginative with children. You need to make housework into games, so you can all play.
Your children will grow up to appreciate that people in this world can have problems and hopefully will develop into well-rounded, considerate adults.
The steroids are the correct dosage to address an attack, or relapse.
Now, can you develop new symptoms, mid-attack? If the relapse is still active, it will be causing damage to your Central Nervous System (CNS), until the inflammation(s) subside. So, new symptoms could appear.
It is important to realise that any relapse activity is best avoided, so you should just acknowledge that you are unwell and look after yourself accordingly. Carrying on regardless is not a good strategy.
Thank you Stumbler! I didn’t realize fully that more and new symptoms could arise during the same attack. Of course I knew this time with the addition of ON but I thought maybe it was a one off. Really important and good info to know. It will definitely force me to not resume regular activities until I’ve recovered. And yes I agree and hope this will help our children to become better people as they age! A true positive of such an unfavourable situation. Thanks again. So glad I joined this forum!
I believe and hope you are getting better now. I recently met with an accident and and have now vision problem. I have seen so many opthamologists but to no avail. I have recently noticed improvement. Can you or anyone else be contacted by mail if you agree?
[email protected] is my mail.
NOTE: e-mail addresses should not be quoted on an open public forum. Communication between members should be by Personal Message, following a friend request. E-mail addresses can then be exchanged confidentially, if both members agree. (Stumbler – Administrator)
I’ve been away from shift.ms for quite a while since real life got more hectic, but I’m glad to see users are still using this thread and sharing their stories! It can really be helpful, as we know no two MSers are the same. 🙂
It’s been almost three years since my ON attack and unfortunately I haven’t seen much improvement in my vision. There has definitely been some minor improvement, in that I can see the outlines of objects from a further distance, but everything is still grey and blurred in that eye (and I certainly can’t read with it). I think this is the best my body can do since the relapse was so aggressive and the damage was extensive.
Fortunately I have only had one or two new brain lesions since July 2013 after I started Copaxone in November 2013. I am glad the drug seems to work for me, but I will always be a bit disappointed that I could not have started it sooner and prevented the damage to my eye. I am happy that the NHS guidelines have changed for treatment but it is a shame I was deemed not eligible at the time and they were simply playing a waiting game on my health.
I’ll wrap this post up before I go off on a tangent! I hope any users with ON are having a swift recovery and their eye(s) feel better soon. I’m glad this thread can offer support and advice to those who need it. 🙂
I hope things improve for you msmama2. I know how it is since I have a toddler at home myself. It is absolutely terrifying having to worry about this along with having to provide for a child. Try to stay as positive as possible I suppose. That is what I’ve been trying to do here even though it is tough at times.
I also wanted to mention that I have been taking a somewhat experimental peptide called semax for my optic nerve damage. I believe there has been slight improvement due to this but it is supposed to be even better if you take it during an attack. I just wanted to throw that out there for anyone who may want to try. It apparently is pretty low risk and potentially high reward.
More info – http://www.ncbi.nlm.nih.gov/pubmed/10741256
I haven’t been diagnosed with ON or MS yet. My grandma, aunt and uncle all have/had MS so it’s a big topic in our family. I had a burst of MS type symptoms in 2011 and my PCP referred me to a neurologist, but I didn’t go. Since then, I’ve been generally clear of anything new, other than my fingers going numb and burning sensations up my arm for about a week last fall…which I also chose to do nothing about.
This past Wednesday, though, I thought a migraine was coming bc my eye was sensitive and head was starting to hurt. My typical migraine meds didn’t help. I thought it was strange but it never developed so I didn’t think much of it and went to sleep. Thursday I noticed my left eye hurt whenever I moved it and things seemed just slightly off. I Googled it and ON was the first thing I looked at. When I saw the huge relationship to MS, I figured I should probably get it checked out.
I went to my PCP Friday. Her response after looking at my eye was “Huh. I don’t see anything wrong.” So I told her about what I had read and asked for a referral to a neuro ophthalmologist. She insisted they could do nothing and that I needed to just go straight to a neurologist. Unfortunately, I can’t get in to see a neurologist until November (4 months from now). This is useless. Today I noticed bright colors weren’t so bright in my left eye and things seem…not blurry, but unstable, in the left eye and it still hurts and I have a constant headache from it.
I’m feeling really stuck right now. I’m very concerned that I’m a day or two away of my vision just going out and that it could have been prevented.
Hi @lucybe25 and welcome.
Yes, it looks like you do need some answers. Is it possible to get a quicker consultation with the Neuro, by offering to pick up a cancelled slot at short notice?
Otherwise, you need to rest up and chill out. Anxiety and stress will only make things worse. So, take good care of yourself.
Thanks for the support! I did get myself put on the cancelled appointment list, so hopefully that helps! 🙂
I also called my doctor back today and asked again for a referral to an ophthalmologist. I instead got one to an optometrist, so I am going to see her tomorrow morning. There are only 9 doctors at this place – three are ophthalmologists and one is a neuro-opthalmologist, so hopefully this will at least get me headed in the right direction!!
Hey! Just thought I’d share an update. I was very lucky – when I went to see the optometrist, she suspected optic neuritis and was able to snatch up the neuro-opthalmologist for a quick review. He scheduled me in for an emergency appointment 3 days later. My symptoms included the pain, slight color loss and it took a second for my eye to focus, but I never lost any vision – I maintained 20/20. The doctor was skeptical at first about it being optic neuritis since I didn’t have any vision loss, but after some tests and imaging, it clearly showed the inflammation and he made the diagnosis. One of the other tests also showed a slight decrease in peripheral vision of the left eye.
So I had a very mild case of it and my recovery has been pretty fast since there wasn’t much to start with. The pain is 100% gone. The only time I really struggle still is trying to read things like closed-captioning on TV because there is still a slight delay in focusing.
I feel very lucky! Next up is the MRI!
That’s great news! Vision issues suck. That’s one of my worst-case scenarios for MS. I cannot imagine not being able to see. I do have some issues — I have the delay in focusing too, it’s actually getting worse but it also doesn’t happen all the time either. But I had my optic nerve looked at about 2 months ago, she said it looked great so I guess I’ll leave it at that. I’m happy for your news though — no pain is great!!! Good luck with your MRIs!
first…lucybe25…i’m so happy that your case was mild…i wouldnt wish this on my worst enemy…
hi everyone…i have had optic neuritis since the beginning of may..my eye dr sent me to the neuro right away instead of to an ophthalmologist first which i do regret now but my eye dr took macular photos and optomap photos and did a visual field test…i had no idea the optho could have taken a better look at my nerve…..but that’s a separate issue.
my optic neuritis started off as a grey spot at the bottom right of my vision which sort of dissipated and turned into blurring and fogging of my central vision after about 10 days. i had already seen the neuro by this point but the MRI was delayed…so 3 weeks in i went back for my MRI results. i did not have contrast as i am pregnant, but my neuro is very confident in the high quality 3T mri machine that was used….i have lesions that are mild and scattered that the neuro says dont resemble MS lesions to her and the radiologist felt were also non specific. i have a long history of migraine with aura which causes the same kind of damage, so i’m CIS for now…i will have more testing after the pregnancy to follow up.
the radiologist said there was enhancement of the right optic nerve at the apex in the rear of the orbit…
i could not have the steroids due to being in the first trimester of pregnancy…so it has been a wait and see approach since then. around 6 weeks in i noticed the fog was starting to go away….so for a few weeks, now almost 12 weeks in i’m left with dim light and blurry vision…i think the dim/light difference from one eye to the other is giving me issues with how i see moving objects…so i dont feel comfortable driving. did anyone else have this?
i am still seeing phospenes in the dark all the time. does this mean i’m still in the acute/inflammatory phase? i FINALLY see an optho at the end of this week after waiting and waiting for an open appt.
i had a sinus infection for a good 4 weeks in late may/early june and am currently taking antibiotics for a possible ear infection caused by the sinus issues.. i had nausea with some morning sickness and fatigue from the pregnancy for about 2 months and am wondering if all of this (along with growing a human) isn’t helping my body heal the rest of the inflammation..and you can only imagine the stress i’m under dealing with this a “this could lead to MS” during pregnancy…this all came out of nowhere…
i am hoping there is still time to see improvement but i see a lot of sites say 1-3 months is typical recovery time..then you see people on sites like these saying it took months and months to see improvement.
i guess i’m looking for some insight and a little hope here….thank you all for reading.
Hi @miamor1111 and welcome.
Yes, your body does need to recover, but having an infection as well is probably “complicating” the issue. This does sound like MS, or an auto-immune condition, so when our immune system is activated, i.e. with your sinus infection, it can exacerbate our auto-immune symptoms.
Things should settle down once the anti-biotics have cleared the infection and them you can relax and give your body a chance to recover.
Hopefully, your hormonal activity, during pregnancy, will help this recovery.
thanks for your reply stumbler..
i worry since it’s been almost 3 months since it started and six weeks since seeing some improvement that i will not see further improvement…
i haven’t seen many people update with their time recovery in a while..
@miamor1111 I don’t have any insight, but I’m sending positive vibes your way! Hoping the ophthalmologist can help you out! The health care systems, I’m learning, are very difficult to deal with. Keep us posted!
@isaacson72 thanks! I agree, vision loss would be tough. It sucks having intermittent issues – I can imagine the focusing delays get on your nerves (no pun intended), but I’m glad you haven’t had any vision loss!
Hey, I felt like sharing since I currently have this problem and Im worrying a lot that my vision will never return to the way it was. Not sure that I have a MS, most of tests (including MRI told me that Im perfectly healthy)
That morning I spent 4 hours puking when I woke up, from 3 to 7 am. It usually happens just 1 time a year – early in the morning during summer, and then I get better. I don’t have a food poisoning, nothing like that. But that morning everytime I put my head on a bed I immidietly started to feel dizzy and wanted to puke again. Had to get a grip and hop on a train to another city (that was my vacation last august), in a matter of 3 days I completely lost the sight of my dominant eye. Had to take a train back to my city and be hospitalized. Spent a week in hispotal with corticosteroids and my vision started to return back. I had about 80% of it back when I got back home, and it’s been 2 weeks… since then – no improvement at all.
Im not sure if I can still hope for any improvement and it bother me a lot. Im 24 and I really want to get my normal vision back, since I still cannot read from the screen with the right eye.
I’m writing this about my boyfriend. We’re still in the “this can’t happen to us” stage, but we well know that it can.. In the beginning of July his right eye started to get blurry like a white light or a flashlight was shining it in. And within 2/3 days he lost 90% of the vision he could only see outlines of shapes. About a week ago the same thing is starting to happen in his left eye. The first two doctors (opthamalogists) could not see anything. They did a few tests including an angiogram and everything looked normal he also had an MRI done with and without contrast. The report came back clear from what we/they could read. So they referred us to a neuro opthamogist who really had NO answers. He said possibly optic neuritis and ordered blood work for genetic testing for NMO and one other devics disease. We still haven’t gotten them back. In an attempt to save the left eye he has him on a 3 day 1000 MG IV drop of steroids, he’s having typical reactions to that which he is just battling through. He is also referring him to an MS specialist to hopefully rule that out. We are trying to set up an appt for yet another specialist in NYC. I guess I am just wondering when anyone was diagnosed with diagnosis, how confident were the doctors in that? We are looking for any small window of hope here.
Hi @khall , it’s good of you to join us on behalf of your boyfriend.
Unfortunately, our bodies, especially our brains, are complicated pieces of equipment. So, you’re seeing the right people to get a diagnosis. It’s just a question of patience whilst tests are undertaken and evaluated. Medical Professionals will not give a formal diagnosis until they are certain.
The steroids may assist. Well, they shouldn’t do any harm. The steroids will address any inflammation on the Central Nervous System (CNS), which may be causing the problem. You’ve already alluded to the short term effects of the steroids, but these will be very short-term. The steroids will be helping the recovery over the following 6-8 weeks.
However, your boyfriend does need to rest up to allow any recovery to take place.
He also needs to avoid worrying and stressing about the situation. I know that will be difficult, but these negative emotions do make these situations worse.
Hope this helps.
Thank you @stumbler for your response it put me at ease a little. The body and mind are very complicated you’re right! It’s just a waiting game. I’m trying to keep him relaxed and calm while still trying to tackle getting everything together for another opinion further away. Plus side about the steroids it’s making him very chatty! So it’s a bit helpful for distracion purposes. I wish we had asked a few more questions with the doctor because his one optic nerve I think he said was pale (the first bad eye) we didn’t think to ask the color/damage of the left eye. Reading through this forum isn’t really giving me a better outlook then when we left the doctor, what a great outlook and support system to have available. Thank you again
Hi I’m writing from Ireland. I had optic neuritis in April 2010. It was only in my left eye and I felt as if my vision had gone ‘wonky’. I went to the A&E in Galway and waited there with a supply of food and water and waited a few hours to be seen. A private appt with an opthalmologist would have taken 2 weeks and I couldn’t wait that long because I was very worried about the black blotch I could see which partially obstructed the vision in my left eye.
After being examined by the opthalmologist she told me it was optic neuritis. I asked her was it caused by eye strain and she said the cause was unknown. She did tests and found out that my colour vision was impaired.
She told me that optic neuritis was an imflammation of my optic nerve and offered me an MRI scan of my brain. That was April and the MRI was in September. The optic neuritis cleared up with no treatment in about four to five weeks. I was so relieved to have full vision back.
I have food addiction and at the time was following the FAA food plan. FAA is like AA but it is for food addiction instead of alcohol addiction. This food plan is completely free from sugar, flour and wheat. I credit that with my recovery from the optic neuritis. I wasn’t offered any treatment for it and was told I might go blind.
The MRI scan showed that I had demylenisation in my brain tissue but only in very small and few patches and I was reassured that it was mild. I was then offered a lumbar puncture. I refused because someone told me it was extremely painful but when I eventually had the lumbar puncture it was completely pain free. This is because I followed the advice to lie still for hours afterwards. I met a woman who got up after the lumbar puncture and she suffered for that. I had my headphones with me in the hospital but I found just lying there listening to the gentle conversation of the other patients was enough to pass the time.
My neurologist told me he was diagnosing me with MS because I had three signs. The optic neuritis, the proteins in my spinal fluid and the demylenisation in my brain. I was somewhat OK with the diagnosis. It explained the tiredness I’d had for years. I refused Copraxone for the MS because I was already on meds for another illness and I don’t want to overwork my liver. My MS has remained mild over the years thank god.
A friend who meant well told me of a website about MS and it half scared me to death because it was so negative about MS and all it was about was promoting a diet that you would have to buy – what a load of scaremongering rubbish it was! I’m so glad I found shift ms it’s such a positive and sensible website!
I don’t follow the FAA food plan any more because it was too strict but I still have porridge for breakfast.
Oatmeal is very good for inflammation, so is celery. Celery is alkaline so it’s good for counteracting the acid of other veg. I have two sticks of it for lunch along with other food. Sugar is very bad for optic neuritis and also for demylenisation because it makes any kind of inflammation worse. It doesn’t work overnight to give up sugar and alcohol but it definitely works well in the long term.
Having said that, I sometimes have the occasional sweet treat like dried fruit, chocolate or a slice of fruit cake, but I don’t drink or smoke, so I feel I have to have some fun. I love oranges. I put two chopped apples and a good sprinkle of ground cinnamon in my porridge to give it texture and flavour and its very filling.
Hope my story helps someone. I was born in Leeds England and had a very happy childhood there with wonderful neighbours, English and Australian. Love and best wishes to anyone with MS or those who worry about it. I was told it doesn’t mean I’m going to die of MS; that some people with MS live to their 80s and 90s and die of old age. This is comforting so I’ll share it.
Mine started with a mild pain in my right eye on Th june 8, 2017. By Sunday my vision started blurring, it wasn’t exactly blurry but things looked like less bright and colors washed off. I went to see an optometrist who diagnosed an optic neurites and referred me to an neuro ophthalmologist. The doctor recommended an MRI of Brain and bunch of blood tests including Lyme, FTA ABS, RPR, Folate level, ACE, ANA (not sure what some of terms mean) . Luckily my MRI came clean and there were no signs of MS. Blood report was also normal. Doctor told me that my case doesn’t need any steroids and is going to recover on it’s own. But the situation at the ground is that this vision difference is bothering me a lot. I have lost around 40% of vision. I am a software techie by profession, spending 9 hours in front of computers exaggerates the blurryness of my vision. I was asked to use an eye patch but that didn’t help much. Now I am entering into 4th week of ON and I haven’t seen any improvement so far. Like many other people on this thread I started panicking. But reading through some stories here made me feel better and I thought of sharing my story as well. I am hoping that it would be better in future but if it isn’t I will live it.
You’ve probably had lots of similar replies but I share my experience as I’ve just been to see my ms specialist for the first time this week.
I lost sight in my left eye over 3 years ago and was told it was trauma related as was hit in the face (very gently) by something. It recovered 100% so I moved on. I just recovering from losing my sight in my right eye 3 years later and this time at the hospital it progressed until I was diagnosed. I still haven’t got my sight back fully after 3 months when I was originally told it would take around 6 weekend. The ms specialist this week told me that it can take up to a year maybe longer to fully recover. It’s seems ages but now I’ve got hope that my eye will return to normal over time.
It’s a strange sensation and a tough episode to deal with as your sight is so vital.
I had given up with my eye sight returning but now I’m feeling happy it may take longer but still a chance it will be back fully. Just got to play the waiting game. Hope your sight improves soon (if it hasn’t already) just keep positive. 🙂
Just to update everyone on this forum, today I completed one month since I was diagnosed with optic neurites. I have not seen any improvement so far. My vision is still blurred, eye ball edges pain with eye movement which indicates things haven’t healed yet. My next appointment with doctor is on 19th. I am just wondering is waiting and watching a right to do or should I scream loud enough about it and consult doctor earlier.
@sajju80 , is your Doctor a General Practitioner or a Neurologist? It’s just that interpreting MRIs is a bit off a specialised skill, as is diagnosing MS, which may not present on an MRI!
There’s obviously something neurological going on, which needs to be followed up.
It may be worthwhile to consult your Doctor again. After all, it was them that suggested that it would improve without assistance. So, your question would be, when!!!!!!!
hello every one, i had my first attack of ON 2014, i had partial loss of vision on my left eyes then got thereat ed only for it to attack my right eye, i finally cleared…as at last weekend it started giving me symptoms and gradually i losing my right sight. i also noticed that i really can’t coordinate my legs well, it feels heavy to carry and i feel tired…please what should i do.
Bisi, how’re you doing? From your name, I’m guessing you’re Yoruba and from Nigeria probably, I’m Ayomide from Lagos and I’ve been having these very weird symptoms too, maybe we could text or something, let me know when you see this.
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