Last reply 9 months ago
Optic Neuritis

Good afternoon
Brand new to this site and not really au fait with chat groups – not generally something I get involved with, so please bear with me!
Also potentially feeling a bit of a fraud because I have not actually been diagnosed with MS at present, although I have been warned that the optic neuritis I am suffering in my right eye could be the first sign of it and it does seem to me that it is hard to read of ON without it being linked directly to MS.
So the problem is that the ON came on last Feb/March and I went almost completely blind in the eye following a couple of weeks of pain. I am now nearly ten months on and whilst the vision in my right eye is undoubtedly very much better than at the start (like I can actually see things again) it is still very blurred with colours washed out – a familiar pattern it seems. So the question is what hope have I got of ever getting back to where I was before this happened? Unfortunately my left eye is a ‘lazy eye’ and not great so with the right eye like this I am quite hampered.
Also does anyone else, like me, live in fear of the other eye going too? If my left eye was as bad as my right is now, there is no way I could drive or pursue many of the things I love, such as boating, I just wouldn’t be able to see well enough. And knowing how this eye just upped and happened one day for no apparent reason I now live my life waiting for the other one to go and my life to change for ever.
Can anyone offer any words of comfort or encouragement??
Best, Allan.

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stumbler
9 months ago

Hi @onsufferer and welcome. You don’t need a diagnosis of MS to join us. A lot of our members started off here without a diagnosis, so you’ll be in good company.

Optic Neuritis can be the first symptom of MS, but nothing in the world of MS is ever that black and white.

I can understand your concerns about visual problems and the potential impact on the quality of life. However, you can’t now live your life worrying about something that may never happen.

Did you have any treatment for the Optic Neuritis, e.g. Steroids? And, are you presently under a Neurologist? It would be good to have a bit more information about where you are at the moment.


onsufferer
9 months ago

Hi Stumbler, thanks for replying to me.
When this started I went to our local eye hospital but after three visits they could not tell me what was wrong, so I took myself off to an ophthalmologist privately who diagnosed the ON. He was reluctant to prescribe steroids as he said it speeds up the recovery but does not actually improve your prognosis, and because of the side effects he did not recommend it. He also said that with the best will in the world there was no treatment for the condition so we just shook hands and here I am. Never really thought to go back to the NHS after he said that.


stumbler
9 months ago

@onsufferer , it would be worthwhile discussing this with your GP to see whether they would refer you to a Neurologist.

Have you had any other weird and unexplained medical situations over the years? If so, it would be useful to list them so this is available to your GP and your potential Neuro.


onsufferer
9 months ago

Errm, only thing that springs to mind (and seems topical) is that my left leg sometimes gives out on me, but I did have spinal surgery a few years ago and it has only happened since then. A physio once said to me it is more likely to be nerve damage from the op than anything else, but who knows?
Thanks for your advice on a neurologist though.


onsufferer
9 months ago

By the way, how about YOU? What is your diagnosis? Have you had ON at all?
Kind regards


stumbler
9 months ago

Me, @onsufferer ? My diagnosis has been Secondary Progressive (SPMS) since 2010.

I’ve never had Optic Neuritis. All my problems seem to be on the bottom half of my body……


onsufferer
9 months ago

That doesn’t sound great – forgive my ignorance but where does that feature in the spectrum of MS diagnosis?


stumbler
9 months ago

@onsufferer , no MS variant is good. But, I’ve been through the Relapsing/Remitting phase and I’ve “progressed”.

So, no more up and downs for me, just a gradual decline. And, no treatment………..


onsufferer
9 months ago

Oh. Not sure what to say to that Stumbler, but I’am obviously very sorry to hear that. I hope you do not get ON as well then, it sounds like you have enough to deal with already!


poppy12
9 months ago

@onsufferer I am with @stumbler. Get yourself a neurology referral including an MRI scan. All forms of MS are progressive and if you qualify for treatment (i.e. you have MS and it is relapsing remitting (RRMS)) get onto one. With MS it is all about preserving function and reducing the number of relpases, so you don’t accummulate disability. The timing is crucial here.

Regarding your ON, I am living by the rule that anything that hasn’t recovered after 6 months is probably unlikely to come back. Anything that hasn’t recovered after 12 months definitely won’t come back.

Hence, you may be stuck with your eyesight but this is where my 1st point above comes in: Make sure you see a neurologist and get onto treatment if you are eligible to stop the MS in its tracks.

Take care, poppy


stumbler
9 months ago

@onsufferer , it’s not that bad in the overall scheme of things. There are worse things and worse scenarios out there.

It’s been a problem that’s been creeping up on me gradually over the years, since my first episode back in 1985. It is an inconvenience, but it is what it is, so you just have to get on and do whatever you can within your capabilities.


Anonymous
9 months ago

Hi @onsufferer – great advice from @stumbler & @poppy12 – I was diagnosed, in 2000, as I had double vision. My GP referred me to a neurologist where I had an MRI & diagnosis pretty soon after. @stumbler makes a really good point about have you had any weird or unexplained medical situations in the past. I say this because in some ways my diagnosis was a ‘relief’ as it explained things that had been happening to me in the year or so beforehand (sensory things mostly).the double vision only lasted 4 or 5 weeks & I’ve never had it since! This is a really good site for information & advice, so please do come back…

All the best,
Craig


onsufferer
9 months ago

Thank you all for taking the time to reply to me. I will take your advice and make enquiries about seeing a neurologist today.
Off to work now so have a good day!
Kind regards

Allan.


Anonymous
9 months ago

Hi Allan, Try not to worry if you can help it. I Had ON 20ish years ago. It completely sorted itself out after a scary few weeks. Had a touch of colour blindness. I found out at the time myself there could be a link to MS but I tried not to dwell on it. Fast forward 15ish years with nothing in between and I started with what I can only describe as day time dreams, like deja vu with an uncomfortable state of mind and nausea. Put it down to stress as they only happened for 10 seconds or so and weren’t noticeable to anyone else. After a time I saw the gp because I woke up with one and they clustered the next day. Lo and behold I was sent for an mri and I had many small old longstanding lesions in my brain. Diagnosed with temporal lobe epilepsy, probably caused by lesions in brainso treated for that now. I have had zero typical MSsymptoms. I am classed as benign. Neurologist doesn’t expect to see any rapid deterioration, if any. Many people are found to have hadMS once they’ve died of another cause but never shown symptoms. It’s a weird disease for sure but ti’s Not a disaster if you do end up with a diagnosis, I am proof of that thus far. Wishing you all the best. New treatments are just around the corner too. Keep the faith 🙂


sophiarosa
9 months ago

Hi Allan,

I really feel for you, as coincidentally- I also had ON in February and I also have a very lazy / bad eye that I can barely see out of. I had this since I was a child. So when I got the ON in Feb, it hit my ‘bad’ eye. Now I am also walking around afraid it will happen to my good eye.

I have been diagnosed with MS however, and can only agree with other posters, that it would be a good idea to push for an MRI. You might not have it, and no one intends to scare you to think that you do have it. A lot of people with ON don’t go on to develop MS, but having an MRI will ensure you know for sure how high your risk is. If your risk really is high, then you could be offered treatment which might prevent ON in your good eye! I am unfortunately not on treatment yet, as it takes absolutely ages- good old NHS. But I am hoping in the new year I can start Tecfidera and worry less about my good eye getting sick.

Best wishes! let us know how you get on. Also, one of my Neuros told me that I should take Vitamin D to prevent ON- this was even before my diagnosis, so you might want to consider getting your levels checked.

Sophia


mehrush
9 months ago

Hi Allan, It all happened 6 months back my left eye started blurring and after all that I’ve got to know that I have MS and optic neuritis almost half of the vision was gone! My doctor put me on 1 gram of steroid insfusion for 5 days but it didn’t help and almost 90%was gone so they did my blood plasma exchange and he put me on oral steroids.. my vision started coming back and it came almost like 70% then I got two three relapses again and again and now it’s left with some 50% and in my current MRI it shows shrinking of my optic nerve I don’t think it will come back!

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