Optic Neuritis - Probably MS and Terrified.

New diagnosis and before diagnosis
1

Hi

I am writing on behalf of my partner as she currently is unable to see text.

On the 7th October she started experiencing light sensitivity - she thought this was a hangover as we had been to a wedding on the 5th and the wine flowed freely. By the 11th October - she started losing vision (words) in her left eye. She went to the urgent eye care at the hospital and was told her eyes were fine and to go and see how she goes. We were going on holiday and asked if it was safe and they said yes it was fine.

We went on holiday, her eyesight kept deteriorating and by the Wednesday her right eye was inflamed - we think from the eye exam as a stye had come on that eye. We booked a flight home as she was quite upset and booked in the Doctors thursday morning.

We were sent back to the urgent eye care and told not to leave without a neuro appointment. He had a look at her eyes and said they looked fine. He did an urgent referral to neuro and said we would have an appointment that day or the next. He said it could be a stroke or something else which he didn’t want to say. This terrified her and she was unable to sleep for four nights after this.

We didn’t hear anything. By the weekend her eye sight was getting worse and her right eye was starting to lose words - she could not read any text in an eye exam with her left. We went to A&E and asked for Neuro - Neuro refused to see us and said she would have to go back to the eye clinic and get an up to date test before they could see us.

On Monday 22nd October, we went to our GP for a fitnote due to her being unable to work. He did an eye exam and called the Neurology ward and demanded they saw us that day. We went up and had an MRI. The next day she had an LP and started three days worth of IV Steroids. By the weekend she was admitted to hospital with severe pressure in her head. They put this down to the LP. She was now unable to sleep without the aid of Zopiclone.

By the 1st November, she still had no improvement in vision - I called the hospital for some advice and they said we would have to go to A&E and wouldn’t speak to us over the phone. We went to A&E on Sunday 4th due to the eyes and the pressure in the head when she closed her eyes. It would build up. They told us to go home and try and get our appointment with the consultant expedited.

I called the secretary on the 5th November - she said she couldn’t expedite the appointment but she would call the on-call registrar and ask him to speak to us. He had us back in to see him on the 7th and did an eye exam. Both eyes were still the same and had not improved. The LP also showed 98% probable that it was MS. He gave two more days of steroids and sent us to the eye doctor. The eye doctor had a good look, the inflammation is where both optic nerves meet which is why it started affecting the right eye, although the left took the brunt of the inflammation - he said this might be why it is taking longer to heal.

So she has now had 5 days worth of steroids - it will be 5 weeks on Thursday since her eyesight started to deteriorate. Has anyone else had experience of the inflammation at the point where both nerves met - did it take longer to recover? She is really scared - she worked for ten years to become an accountant and her eye sight is the only thing that would make her have a day off work. She hadn’t had a sick day in 21 years since she started working at 16.

Is there anything I can do to help her? Help her eyes recover? Anything? I would do anything for her she is my absolute world. She was in my arms crying at 2:30am this morning as she still cannot fall asleep naturally and as she lays there this pressure starts building in her head behind her eyes. Is this a normal period of time to see no recovery at all? I’ve looked through so many forums and seen so many people saying their eyes healed within 2 weeks and then people who say they never had improvement - its terrifying. She told me if she had a pill that she could take and go to sleep for ever she would take it. I think the withdrawal from the steroids is still happening as she has been so low. She has been complaining of tingling in her legs and when she wakes up her hands are numb - this could be withdrawal though I think?

Sorry for the long message - I just don’t know what to do to help her. We have been referred to an MS Specialist, but no appointment yet and no MS nurse yet so no one to ask for help. I feel so helpless - this is all terrifying as you can all imagine. I can’t believe they tell you, you probably have MS and then just send you home, no number to call for help or advice, no counselling. Also - no one offered her counselling for her eyesight. Our lives have been turned upside down. We have had 5 years of hell, losing one parent after another, then my grandma and then my mum got cancer and now this… this has been since 2014 and we thought this year was going well. We thought finally a year without anything major in it - how wrong we were.

Thank you for any advice and thank you for listening.

x

2

Hello

Oh blimey, you are in a state, the pair of you. And I’m not surprised. It sounds scary. And that’s from the perspective of having had MS for 20+ years.

Eye sight is very precious. And having a threat to your eyesight is frightening. The fact is that when you know it’s under threat and are unsure as to when it will (and of course, that’s assuming it will) recover.

If your partner does in fact have MS, and this is an attack of optic neuritis, that may well recover quite well, due to the IV steroids in part, and partly as a result of natural recovery from a relapse. Recovery from a relapse can take weeks or even months. And that is hard to get hold of in your mind. MS (if that is what she has) is an absolute bugger for being contrary. What works once for person A may not work for person B. In fact it may not work the same way again for person A.

But, the majority of times, people do recover from optic neuritis. You just have to hold your nerve (!) to some extent. And the whole process of having appointments, tests, waiting for results, getting a diagnosis can feel never-bloody-ending. But it will.

There’s nothing definitive that I can tell you. Yes, it could be MS, but it may not be. Yes, it’s probably recoverable from. If it’s MS, then chances are it will be relapsing remitting. In which case there will be drugs that can help prevent future relapses.

There is no way that your partner can’t follow her dreams and continue her life more or less as planned.

Whatever happens, let us know on here, and if you do have more questions that we might be able to help with, then let us know. We’ll do our best to help.

Sue

3

Hi everyone im newly diagnosed nd joined the group just now. I have had 2 episodes of optic neuritis in a years time . How bad is tht?

4

Asmazam - that is awful. I truly am sorry that you have had to suffer optic neuritis, my heart goes out to anyone who has had this horrible symptom. x

5

Hi Ssssue

Thank you so much for your reply. This is a horrible, terrifying time and even though I have read that everyone can take different amounts of time to recover - I am terrified. Every morning I wake up praying with all my heart that she will have a slight bit of improvement - but so far nothing. Not even in the right eye where it wasn’t so ‘badly’ affected. The last bits of words keep coming and going.

I keep thinking - what if we made this worse by flying twice during the beginning. I don’t think I could ever forgive myself.

I feel like, if she could just get some of her vision back (i know not always 100% comes back). But if she could see some improvement and then start feeling better once these steroids get out of her system - then we could face this together head on. A bit of normality could come back - she could go back to work and feel like she is useful (she is terrified of not being useful, although I have told her, she will always be useful to me no matter what - just by being her she makes my life complete).

We are going for walks daily to get some exercise and she is taking Vit D and Flaxseed Oil. Eating walnuts/cashews and blueberries and drinking turmeric tea and everything else anti-inflammatory that I could read.

6

Hi,

I’am sorry to hear that. i’am currently in the same position as you as my wife was diagnosed with MS in Sept this year. She also had optic neuritis four years ago (before i had met her) but she tells of a similar story to that of your wife. It took her 3 to 4 months before she fully got her vision back. It may be that - it may not be what you want to hear - but perhaps a good thing they say it is MS. That way it could get treated asap as opposed to constantly trying to investigate what it could be.

i understand what your going through and its a bummer that youve had to go through all these ordeals in such a small amount of time. I hope things get better quickly and you can get this treated for her and get back to your normal lives.

Let us know how things go and there are plenty of good people here to help.

7

Thank u so much guys for resonding . My story starts from being a super active mom always on the go to a 13 yrs old boy and suddenly my life went upside down wen we got the news lastbyear same time tht im pregnant despite the fact tht i was infertile after my first babys birth for 13 yrs i was only getting my head arround surprised pregnancy wen weird symptoms hit me numbness and stiffness followed by ms hug and optic neurotis 6 weeks i dint know wat was wrong with me till i got to see my heamatologist Thats where i came to know ms never hear of anything like ths before sp.whole of my pregnancy i was a ree alert for doctors they didnt diagnosed me with ms then but lupus after the baby is born i did another mri and tht has 4 new lesions since last mri in march and now i have been officially diagnosed with Ms.my medication will start next year wen ill stop feeding the baby so hopefully till thtn i might remit . Just need support and prayers

8

I don’t know this for certain, but I am sure that air travel couldn’t have made things worse for your wife. And it’s something you can never find out for certain, so just stop beating yourself up for it. Nothing about this is your fault. Nor is it your wife’s fault. It’s just bad flipping luck.

Keep in your minds that although the last 5 weeks have seemed like forever for the two of you, an MS relapse (assuming that is what it is) can take a few months to recover from. Even with the steroids. Steroids are actually a bit of a hit and miss treatment. They are not a cure for a relapse, their aim is to shorten the time it takes for inflammation to dissipate and thus for the symptoms to go into remission. Sometimes they work fast, sometimes slower, sometimes they don’t work at all. And your reaction each time can differ.

I’ve had MS for 22 years now, have had steroids many times, occasionally they work super fast and brilliantly. Sometimes a bit slower, but I do get remission. And sometimes they are useless.

They also make you feel like cr@p, and can leave you feeling really quite depressed. As well as kind of bruised all over (like you’ve been tied to the back of a horse and dragged along - old Western style!).

So don’t give up hoping for remission. But keep in your minds that whatever happens, there’s really not much more you can do. You will survive regardless of the outcome. And you will be strong for one another. Keep remembering whatever the outcome, you are both the same people you were 6 weeks ago. Your basic personalities don’t change.

Sue

9

It’s hard to get out of the ‘what if’ stage. ‘What if we hadn’t gone snowboarding and she fell that way’, ‘what if we hadn’t drank so much at the wedding’, ‘what if we didn’t go on holiday’. Would we be somewhere different today being happy.

I know that kind of thinking is not healthy and I’m sure it will pass. My wife is the strong one out of the two of us - she is the one that says we have to just deal with it as we can’t change the actions we took.

Thank you for your advice about the relapse - it does give me hope that this might improve and she will be able to get some normality back. I think then she will feel much stronger.

Yes, the steroids have been making her more down and she has been having like muscle cramps and stuff - she has had tinnitus for the last couple of days and she starts panicking incase it is not the steroids and her brain is just going wild in her head.

I guess we just have to take one day at a time and hope hope hope for a good outcome. Thank you so much again for responding. x

10

Hi Pollos

I’m sorry to hear about your wife. Thank you for your response. That does give me hope that given time her optic neuritis should improve. It’s so hard the waiting game - especially when you love someone so much, you would give anything to help them recover. I just want her to be happy and healthy - my only wants in life.

It must have been awful for your wife waiting three to four months - what a scary time for her.

Thank you for your kind words - it means alot.

11

Asmazam - you definitely have my prayers. I hope you are able to stay healthy until you are able to get on your medication x

12

About 16 years ago I took a bout of double vision in my right eye and was sent to eye clinic - they told me that it would maybe clear up and it did but it came back again and I was referred to neurology and a quite speedy diagnosis of MS - I haven’t had much bother with it since and still have MS but still on my feet, thankfully but still get jagging pains behind my eye, when I’m tired - it can be a big indicator of MS according to some “experts” - good luck

13

Hi Redman

thank you so much for your reply. My wife has like a cloud over her left eye she said in a morning when the light comes through she can see the hologram shape of this cloud and it’s obscuring her sight. It’s so hard waiting to see if it will get better and not knowing. It’s hard to believe they can send rovers on to different planets but they can’t ensure your eyesight comes back! 5 weeks 3 days in and counting like a mad person.

14

Hi there I’m 29 and for the past five weeks I have been really unwell. Flu like symptoms, episode of double vision amd lose of sensation on my right side which cleared, then my right eye vision started to deterorate … feeling extremely tired aching amd really bad headaches amd pressure. Finding it hard to do anything. Also not been eating well . I was put on steriods and my right eye vision isn’t as bad now. I had a mri which shows Demilanation patches of nerve damage . Amd bow I had to wait up to 6 months to see a neorolagist for a diagnosis amd treatment :-/. . I feel so unwell . They said to Try exercise amd think positive could have been worse and how I’m healthy young woman amd will live a long life but feel so unwell and so worried if anything else happens especially as iv got two young girls aswell. I’m finding it all extremely hard . As soon as i get treatment i imagine thinhs could be bettwr its just a horrible wait for my neorolagist referred thats taking time many thanks Top

15

I keep telling everybody to get their gp to give them gabapentin as that helped me walk and breath! It was so fast it felt like a miracle. Also for inflammation take ibuprofen or better yet naproxen but with the lanoprazole to protect the stomach. Theres no harm in trying the gabapentin and it could work for her like it did for me. All the best. Xx

16

Hi Everyone I am 34 newly diagnosed end of September but reckon I’ve had ms at least 10 years and didn’t know in 2009 I had optic neuritis ,vision reduction in both eyes didn’t know what is was back then went to so many opticians they couldn’t see anything, had a mri nothing showed up my eyes cleared up on its own within 2 weeks time, then no major symptoms just the odd numbness and tingle in feet which I just put down to my job, until this year Jan 2018 when I work up with spasms tinginling that lasted a few months then went away then came back in May alongside some cramping that went away after a few months and recently in last 4 weeks I’ve felt weird like I’m tipsy vision slightly off but more of tipsy feeling, ms nurse said no to steroids as I’m not tht bad, by the time I see the doctor for my first appointment in Jan 2019 I would have waited 3 months is that a normal time to wait? Feels so long,how long did it take before you were put on treatment after first doctor consultation?, did treatment help? I’m hoping I’m at a stage where I can get treatment, thank you everyone X

17

Hello Melmel

Welcome to the club that we’d rather not belong to!

Average wait times vary so much, it’s impossible to give an average wait between diagnosis and neurologist appointment to discuss treatment options.

It does sound like you have relapsing remitting MS which is fairly active so you should be able to be prescribed some disease modifying drugs (DMDs). Have a look at MS Decisions aid | MS Trust This will give you an idea about the various drugs. But you won’t end up with a completely free choice. It depends how ‘active’ your MS is (ie what the neurologist thinks, based on your relapse history and clinical test data. It might just help to familiarise yourself with the various drugs.

DMDs won’t change your day to day symptoms. Their aim is to reduce the number and severity of relapses.

If you are having ongoing symptoms, your neurology appointment will be a chance to ask about drugs to help with these or referrals elsewhere, whether it be for fatigue, pain, spasms, bladder issues, whatever. So take notes with you of your questions and don’t forget to get your list out. Ask the neurologist about anything you don’t understand and if you can, take someone with you, a second pair of ears and brain is always helpful.

Best of luck

Sue

18

Hi Anonymous,

Sorry my response is probably far too late but I have only just signed up to the site. I’m so sorry to hear what you and your parter are going through. I had optical neuritis for just over 2 months. I genuinely felt like it would never improve but it did. My consultant didn’t give me any steroids as I hadn’t been diagnosed (I still don’t have a definitive diagnosis). It really is a horrible symptom to have and extremely scary. I had to be signed off work cause I couldn’t drive, read, watch tv or really do anything. I relied solely on my partner to help me get about and do things. All I would say is that just having you there will be amazing. Other than that there isn’t anything much you can do. I found so much comfort in just knowing my partner was there when I needed him. Stay strong, you will both get through it together. How is she doing? Had she seen any improvement?

19

Hi emms110

Thank you for your message. We went to the Opthamologist on Friday and after 10 weeks and 1 day - she got 20/30 on the acuity test. She still has a gray cloud over her eye, so she was shocked she got that much and she sees better in the dark than in the light. We are happy there has been a bit of improvement though as two weeks ago she had not improved - so it has only just happened.

Hoping it will continue to improve now and the cloud will lift. It really is a horrible experience and incredibly frightening. I wouldn’t wish it on my worst enemy.

She has a diagnosis now and we are awaiting our appointment in January with the MS Nurse. Wouldn’t wish this on anyone either, but here we are.

Hopefully 2019 will be a better year.

20

I have had 2 positive VEP tests for optical nueritis. went blind on holiday etc et el. 2000. it was 2007 when i finally had a VEP test which showed i had slowing of the brain to the optical nerve ON.

again 2015 late, i had VEP test. finally came back positive. I was told by MS nurse when you get you get a flare of ON you need steroids within the first week of it happening or very quickly which slows it down. i never did as my last bout which i know was ON was recently last year. its taken nearly a year for my eye to settle. I hate light, reading on line is blurry and i find it hard to see properly. Now the weird thing is my vision hasnt changed in THREE YEARS. You see it doesnt actually affect you vision where you cant really see or your eyes deteriorate. Its weird i know. Its the way your brain reacts to the optic nerve. so if you have ON it can really slow it down so your seeing things differently.

Yes it can affect your sight and some people take a long time to recover but most recover ok.

I had terrible pain in some of my attacks, doctors said i had dry eye lol.

i had mine it presented like this from Mayo.

I get flashing lights in corner of my eye and i loose peripheal vision too. finally my sight is settling back down again after he last bout it will be a year soon since this one happened. I did the colour chart chest and my colour perception is way off.

Your wife will improve. xxx