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Home » Forum home » New diagnosis and before diagnosis

optic neuritis- on behalf of a friend

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optic neuritis- on behalf of a friend
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emmae
07 May 2012 at 7:03PM
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Hi All,

I hope you are all keeping as well as possible.  I haven't been on here for a while.

A friend of mine who used to visit this forum a lot has just had the news that she has optical neuritis this weekend.  She had a flare last year and was told it was the result of a virus but that she had a 50/50 chance of ms. It was considered a first flare but had suffered dizziness for a long time prior, which may or may not have been related. She was told if she had another flare then they would expect it to be ms and thats what she'd be dx'd with.

On saturday she woke with blurred vision, was checked at moorfields who dx'd her with the optical neuritis right away.  She was told it was likely to get worse, and it has done.  Within 48 hrs she has almost lost the vision in one eye and she is terrified.  Her eye is painful and now she is really dizzy, more so than before.

She is obviously finding it difficult to read and write just now and is terrified of coming on the forum and seeing that it doesn't get better.

I offered to post on her behalf and she said she would like that.

I think her main worry is that her vision won't improve or that it will last months and months being blurry.

Anyone who has had this, I wondered if you can tell me how long you had it etc so i can forward the replies to her? She has had a chat with Karen who has helped her out loads. 

Many thanks everyone,

Emma xxxxxx

Treek
07 May 2012 at 7:39PM
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Hi Emma

I have had this twice before.  13 years ago and 7 years ago.

It took about 5 weeks for me to see an improvement in my vision.  Then a further 2/3 weeks until back to normal - recovering a little at a time. I would think everyone is different though.

It was very frightening but my vision returned to normal after.

As it was a while ago it is difficult to remember - but i think i was given steroids both times.

Someone else will point you in the right direction of medication.  Medication may help it to go away quicker.

Best wishes

Teresa.x

Suzanne1
07 May 2012 at 8:17PM
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Hi Emma

I had ON last october. It was diagnosed at the eye clinic and I saw a neuro a week later. I then had 5 days of IV steroids. I was completly blinded and saw on improvement on the 5th day. I had 6 months off work, I'm a teacher. When I'm tired my vision seems to be a bit blurry. It is without doubt the scariest thing I have ever experienced. I felt so isolated and alone, cut off from everything. It did get better though. Good luck to your friend.

Sue

emmae
07 May 2012 at 9:05PM
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Thanks for your replies, I have copied and pasted them onto her and she really appreciates you taking the time to tell her your experiences. 

I think this second flare and the dx (neuro dx pending but drs said she will be most likely dx'd now), has terrified her so much that she can't look on here for a worse scenario than what she is in now, and understandably struggling with. 

Thanks again xx

fjear
07 May 2012 at 9:18PM
Top

I have had five episodes of Optic Neuritis since 2010. I have had it in both eyes. My right eye always recovers, but left one has still yet to fully recover from 2010. It's not 100% and since it's been a long time I don't expect it to recover.

The most frightening experience was my last attack complete vision loss in right eye, by the I got to Opthalmology and the wait to see the the Ophthalmologist it had started it's recovery. Then after a few weeks it was back to normal again.

Hope your friend recovers quickly.

 

 

rubina
08 May 2012 at 7:38AM
Top

Hi Emma

I've had optic neuritis 3 times. The 1st time was the worst. I lost the vision in my left eye for which I had iv steroids for 3 days at the hospital. My sight started to come back within days and it was about 3 weeks later that I woke up and found that everything seemed more colourful!!

The second time I had it I had oral steroids and the last time - a few months back - I didn't have any steroids at all.

Steroids have definitely speeded up the recovery time of ON - particularly the iv ones.

It can take weeks or months to recover but it does vary. I do have some residual effects from the ON in my left eye which are worse when I'm tired or unwell but my vision returned which is the main thing happy2

I hope that your friend recovers soon

am sending her ((((hugs))))

Debbie xx    

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