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Optic Neuritis - Help!

Hello. I have now had 3 boughts of ON since April - 2 in one eye and one in the other. The most recent bought started in mid Sept and I still can’t see anything but shapes out of that eye after 2 months. I took steroids but they didn’t seem to make any difference. The other eye which has been affected since June is also still a bit blurry and misty. Has anyone else found that recovery took a long time as this site mentions 5 weeks as a likely recovery time? Thanks

Hi KayT

My recovery was over 2 months when I had ON, and I seem to have had some permanat changes in my vision, like my colour vision is not so hot - I’m no longer totally colour blind in the ON eye but have lost the fine tuning for detailed changes

Clare xxx

Everyone is different Kay, I went totally blind in my left eye, then snowey foggy jumpy vision has returned. I suffered recurrent bouts of ON in same eye for 2 years. Apparently 95% people who experience ON get most vision back, some all vision. Whereas remaining 5% are severely affected. Lets hope your one of the 95% whose vision returns back to normal.

MS is so unpredictable its hard to tell anyone the outcome, however try stay positive and hope youll be fine when its left you alone.

I wish you well,

bren

x

Thanks for your comments and the encouraging stats. I wish you both welll too,

Katex

Hi Mel,

I have had the full range because for bout one they didn’t give me anything, but when the other eye went they took me into hospital and gave me IV steroids. When the originally affected eye relapsed again I was given oral steroids. Neither version seemed to make any difference though as far as I can tell! I would be interested to hear about how your ON went if you feel like writing about it.

Best wishes

Kate

Hiya,

I’ve had a few bouts of ON, from being completely blind to colour blind to my vision being as though I was looking through glass with water running down it. I did not find that the steroids helped at all.

My first symptom that was taken seriously and investigated properly (to arrive at the MS diagnosis) was ON making me completely blind in my right eye, that sight has returned probably about 50-60%. The second bout of ON was in my left eye - again, completely blind, but this time I started going for hyperbaric oxygen, after the first session I could read text messages for about 20 minutes and it gradually built to my sight being completely restored in that eye. I had a bout a few years ago where I went red/green colour blind, but that has improved - it’s not brilliant, but it’s not something that I notice any more (to start with, I couldn’t see to pick up after the dog on grass).

Everybody, and every symptom is different, you just have to wait and see (no pun intended) how things go.

Luisa x

FEED UP WITH SAYING IT GRRR . GO TO YOUR GP . TELL HIM / HER . YOU WANT TO GO ON SIMVASTATIN . 40 mg A DAY ITs for HIGH CLOLETOROL . BUT !!! IT HELPS IN A BIG WAY . STOPING MORE DAMAGE IN OP NURI … AND HELPS IN REPER OF DAMAGE !!! I NO BIN ON IT 6 YEARS FOR OP NUR … TOTAL LOSS SIGHT IN BOTH EYES NOW DRIVEING 4 THE LAST 3 YEARS … EX NURSE … A.R. R . MS bodysnatcht man phil xxx

Hi, I had ON twice in the early nineties. The first time I lost most of the vision in my left eye. I ended up in hospital as my legs went awol at the same time.

My vision did improve but then I developed optic atrophy so I now have permanant vision loss and I haven’t been allowed to drive for years.

With ON it can take up to a year for full recovery. My Opthalmologist keeps telling me stem cell research is exciting and not to lose hope.

Jacqui

xx

You could also try LDN, help many but like most things with MS it is just experimenting to see what helps.

Thanks all. I’m not sure what LDN is? I was only diagnosed in June this year so all is new to me really. Glad to hear some of you got back to driving (although sorry that some didn’t). That’s a big worry for me too as I had problems with awol legs (loved that expression!) in my relapse too. I haven’t driven for months now but hoping I will be able to in time.

Best wishes,

Kate x

LDN is basically an oral DMD which is not licensed for MS which is why it might help with ON but it is much more likely to stop it coming back if it resolves itself. The link below details what I said at the MS Society AGM.

http://www.mspurbeck.co.uk/page28a.html

Thanks David. Interesting. I also looked at some sites. The drug industry is frustrating at times!

Hi , I have had ON in left eye twice before and have just started a 3rd attack in my left I in the last few days. Have also had it in both once. My right eye has never completely recovered and has always been blurry.Can still see out of it bit you get used to it and I can manage perfectly well because the right eye works fine.This current attack well time will tell !May go and have steroids if it is still painful on monday.

In the current Ms matters mag there is a section on eye problems .

Helen

LDN is not a DMD!

It may help with some symptoms, it may help you. I have no idea why this poster might think that LDN is much more likely to stop ON coming back if it resolves itself. There is no basis for this statement whatsoever.

I cannot believe that you would be as irresponsible as to suggest that LDN stops ON from occurring / reoccurring! UNBELIEVABLE!

LDN is NOT an oral DMD. Yes, it may make changes in our brains, but DMD is an abbreviation used for the drugs that have been proven to have an effect on relapse rates through both clinical trials, years of prescribing and years of data collection post trials. Suggesting that LDN has the same credibility is misleading at best and downright delusional way before getting to at worst.

No one apart from you claims that LDN stops relapses David. To state anything like this is a terrible thing to do. What if you say things like this and someone believes you and goes so far as to take LDN over a neuro-recommended DMD and then becomes blind because of ON? Quite frankly, if it happens, I hope they take you to the cleaners. You would deserve it.

I’ve had ON more times than I can remember,in both eyes at the same time.Once so bad I had to use a white stick.This is very rare and was only temperary so please don’t panic about that bit.It took nearly a year to recover and although I’ve been left with damage,I’ve become acustomed ot it and doesn’t impact on my life too much.

Five weeks is a short space of time,as has been mentioned it can take up to a year to improve and untill recently,my eyes had continued to improve.I can’t drive anyway and I’m really shortsighted,but my eyes deffinatly improved.It took a long time and was gradual.

I’ve been taking LDN for three years and this is the second relapse in a year and I have ON again,so please don’t think LDN will prevent it.I started taking it hoping it would help my bladder,which it has.

I know it’s really worrying and frustrating and at times scarey,but you have to give it time and try not to stress too much about it,which I know is hard.

Try resting your eyes as much as you can,maybe enlarge the text on your pc to make things less of a strain and try large print books.

Take care,I hope things improve soon,xxjo

ps please forgive typos.

Hi Kate

MS can be so variable and unpredictable, so my experience of ON…

I had ON in 2003 (prior to diagnosis in 2006), I went completely blind in my left eye. The good news is that it did recover completely although it took a long time. Certainly longer than 5 weeks. I think I noticed some improvement after about 6 weeks but it took about 18 months to recover completely. What is interesting is that for years afterwards the scarring on the optic nerve could be seen on eye tests but on a recent one it had healed!

I’m sorry that some people have used your post to make irrelevant and inaccurate comments about LDN. Unfortunatley anyone can post on these boards and although they are entitled to their own opinions, they really should be more responsible about what they post.

Good Luck!

Hi KayT8.

AnnieB made me realise that my anger at David603’s reply meant that I didn’t reply to your original question - my sincere apologies. Tbh, I don’t normally reply to questions about ON as I haven’t had it myself, but I do know of people who have still had improvement many months after the initial attack. So don’t give up hope!

Karen x

Think if there’s anything you’re eating, doing or any product you’re using which might be triggering it. Sounds daft, but you’d be surprised how the little things add up.

Heather

Sympathies to anyone suffering with ON as it is very scary and i certainly hope yours clears up!

I had Optic Neuritis in one eye 5 years ago which cleard up but left my eyesight damaged, then exactly a year later i had ON in the other eye and again it did clear up and i am now left with damaged vision in both eyes and dreading another attack because it is really scary!

I was diagnosed with MS in 2007 and im on Copaxone, I am going into secondary progressive seems to be the general medical oppinion and would agree as i dont get better now, but then again i never did.

So just wanted to say I hope yours does clear up for you!

Take care!

Jayne

XXX