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Anyone about who knows about optic neuritis?

(5 Posts)
Zazzabeans Sat 12-Sep-15 15:42:01

Posting for traffic...
Dh had an episode of suspected atypical optic neuritis back in June lasting 3 weeks before full sight back to normal. No pain just the blurred vision.
After numerous appointments with eye dr etc he has now had ct scan with contrast, which showed more white lesions than of someone who is the same age (34)
He is awaiting visual evoked potentials and Electroretinography (sp) but the opthalmagist has discharged him and is going to write to neurologist to see him or just leave it.
I'm really worried about the chances of him developing ms.
Can you have an episode of optic neuritis and have several lesions and it not turn into Ms ?
Sorry for all the questions but the opthalmagist was very vague yesterday and spoke of lots of statistics and everything being grey matter, I think he did say something about both discs appeared normal and no signs of deminillaytin (sp) I'm so worried.

Crumbelina Thu 17-Sep-15 09:40:37


Please try not to worry, although I know it’s hard! I was diagnosed with Optic Neuritis last November (at 36) and the first thing I did was Google it and found the link with MS. I had pain and blurred vision and was told that there were signs of demyelination.

I had an MRI of the brain and it found “several non-specific scattered in the white matter”. Needless to say I Googled some more and convinced myself I had MS (not a good time!) as so much of the information on websites and forums suggests that ON + lesions will definitely lead to a diagnosis.

I ended up using my private healthcare (work perk, thankfully) to see one of the best Consultant Neurologists in London as I was so scared. He ordered an MRI of the spine and a session of hearing and balance tests (as I had developed migraines/shooting head pains and dizziness). The hearing tests included a very specific one (can’t remember the name) which would be suggestive of MS. All the tests came back completely clear and two Consultants have said that I should be fine and that they’re not particularly worried about me. The migraines and dizziness disappeared a few days after I got told the results were clear (so I’m convinced they were a result of so much anxiety!). I’m being monitored by the hospital (an appointment every 6 months or so) but I haven’t had any more symptoms since. I’m not saying I won’t develop MS (and I take vitamin D religiously every day) but I’m much less worried about the possibility as the Consultant said that he saw a lot of “stressed young women like me” with a lot on their plate who develop ON which doesn’t develop to anything else.

Just a few other random things to note:

I was really stressed with work and a nightmare house move just before I developed ON. I know there’s no link but I can’t help feeling that the stress might have been a factor.

Lots of people develop ON and never have it again (or any other symptoms). You probably won’t hear about these people as they’re much less likely to post on internet forums.

No demyelination is good!

My friend had a brain MRI (not linked to MS) and they found several non-specific scattered lesions. Some people just have them.

Even if does develop into MS, there’s a higher likelihood that it’s likely to be a milder form if ON is the first presenting symptom.

Again, if it is MS then it’s not the condition it once was. Take this thread for example:

Hope this long post helps a bit!

Crumbelina Thu 17-Sep-15 09:44:38

Sorry, that should read: I had an MRI of the brain and it found “several non-specific lesions scattered in the white matter”.

Also, it very much depends where these lesions are in the matter. Mine were scattered and weren't in the regions where you'd typically find them for MS. Sorry, that's not very scientific! smile

zazzabeans Wed 25-Nov-15 08:08:21

dragging back an old thread of mine , so sorry haven't previously seen your reply.

dh has a neurologist appointment but not until feb.
After his initial episode of on, his vision fully recovered as mentioned above.
last week, he started getting pain in the same eye, and yesterday it started to go blurred again sad he is at work all week, but we are going to the eye casualty on Saturday morning.
I know on can come back and have read sometimes it is years between relapses, however 5 month ?? some peoples vision isn't even back to normal within 5 month, yet he had a full recovery within 3 weeks.
are we meant to assume this is a second relapse and this will more than likely result in ms ? he has had several tests as mentioned above, however no outcome as of yet.
I am a very anxious person and this is tearing me apart sad

any advice?

zazzabeans Wed 25-Nov-15 08:08:46

should say, dh is very optimistic and not a worrier !

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