Scared to death (Optic Neuritis and Multiple Sclerosis)

[Anti_virus_Abdo]

Hey all,

okay here's my story, from a month i woke up finding a big blind spot in my right eye without any pain or headache or any other symptoms, i ignored it for 3 days then when i didnt find any improvement i went to the ophthalmologist and he told me that everything's fine with my eye there's nothing wrong and then he requested a visual field and he saw the blind spot there, then he told me that's "probably" an Optic Neuritis so transferred me to a neurologist who requested a MRI+C which was normal too, then he said also that's "Probably" Optic Neuritis but he wasn't sure because he didn't see the Inflammation through the MRI and i started to take steroid pills (40 mg) per day but i wasn't so convinced that it's an Optic Neuritis because i didnt find my self suffering from its symptoms specially the pain and headache parts, so i went to another ophthalmologist who requested an "OCT" and he told me if there is any inflammation it will appear in it, i made it and found nothing also, the OCT was normal then he told me maybe there was a very Simple inflammation and it's gone but it takes up to 6 months to recover and to improve the sight and he advised me to continue on the steroid pills, now i am on steroid pills since 3 weeks and i didnt find any improvement, the blind spot is the same (20% of my right eye) but from reading about it i knew that in 85% i won't recover my sight again but i kept hoping that maybe i am from the 15% that do recover their sight after an Optic Neuritis
what really now scaring me, what i read about the relation between Optic Neuritis and Multiple Sclerosis socially if you took Steroid pills (oral) as a treatment
specially i do suffer from problems in my immune system (Psoriasis) already, i really can't sleep from thinking about that and MS specially i read about many topics and many people suffered from MS after an Optic Neuritis and also many people suffered from Optic Neuritis many times again after treated from it!
am really so scared and don't know that to do, i reduced the steroid dose from 40mg to 10mg because there's no inflammation now (if there was in the past!)
i cant stop reading and thinking about it, and how my future gonna be
now how can i stop thinking about that? the numbers are very scaring
is there anyway to reduce the risk?
sorry for the long topic but i wanted to explain everything to you

Thanks A lot in advance

[zoefromsussex]

You're welcome!

Hmm, well one other thing I should have mentioned is that ON is not unique to MS. Did your doctors arrange for blood tests too? This could be very useful snce there are a whole list of conditions associated with ON such as lupus, lymes disease, viral causes, bacterial infections...really the list is quite long! Also, ON can be a condition by itself. Some people get relapsing ON and some get one attack and nothing more. Blood tests would at least rule out the more obvious causes.

If you haven't got any other symptoms and your vision is returning well then that's obviously reassuring but if you have got other symptoms maybe you could start making a note of them. A lot of doctors use the wait & see approach for MS anyway.

Perhaps it would also be worth getting another mri done in say six months time just to see whether there is any change. Did your initial mri show any lesions or was it totally clear? I would imagine that's a good thing but obviously I'm not an expert! I'm just spreaking from my own experience of ON. I had my first mri within a few weeks of my first attack of ON and it showed lesions on my brain and then they did a lumbar puncture which was positive. I'd also had an episode of Irisitis around four months previously and a history of tingling, numbness etc so in my case MS was a possibility. Then I got ON in the other eye only a few months after and my vision has never recovered so I'm registered as visually impaired now.

I think the important thing is not to panic and do go back to your doctor if you're concerned.

[Anti_virus_Abdo]

Thanks A lot for yor response and answer, and am so sorry for the long topic
really appreciate your time :)
No, i didnt have any further diagonse yet, what should i do?

[zoefromsussex]

Hi, I'll do my best to answer your post but you might get more responses if you break up the text a little as lot's of us have trouble with our vision!
To start with, ON doesn't ALWAYS cause pain. It's more common but I experienced no pain whatsoever with my first bout in 2011. It started as a blind spot and ended with my blind in my right eye. Mine was picked up on mri and with vep but I'm guessing not every case of ON shows up.

I did not take steroids because I was told it would have no bearing on the final recovery. It would simply speed up what recovery there was going to be. Also, I was told that oral steroids can in fact cause further episodes of ON so I just let nature take it's course.

There may be some connection with ms and other autoimmune conditions but nobody really knows for sure. Personally, my dad had psoriasis very severely and my mum has graves disease so it's perhaps a link n some way but I don't think it would increase your chances of MS in partcular.

Have you had any further diagnoss since your ON? I know that sometimes they diagnose a clinically isolated syndrome (CIS) and a dmd can then be prescribed which can reduce the chances of a person developing MS.

I was initally diagnosed with CIS but I also had a positive lumbar puncture and then I developed ON in my other eye so my diagnosis was changed to MS.

I totally get why you are so terrified about MS as I was exactly the same but now I am on the other side of a diagnosis I can tell you it's not as scary as you might think and nowadays we are fortunate enough to have lots of treatments to choose from which can reduce relapses and slow down any possible disability. It's not a cure but it's hope and it's a very different story to the giagnosis stories from relatively few years ago.

I think you will find this forum a huge support and help as there are some great people here and their knowledge is incredible.

Wishing you all the best, Zoe