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@Blindben 

Last reply

Blindben

Optic Neuritis Both Eyes

Hi All So far as I know I do not have MS. I'm not sure really if this is the place to post, but so far I can't find anywhere else where I can talk to people who might understand what I'm going through. I noticed about 4 months ago that I had a blind spot in my eye. Two weeks later and it was significant. Long story short I have optic nerve swelling. They have tested for everything and put it down to 'Diabetic Papilopathy' which so far as I can tell means 'we don't know so we're putting it down to diabetes somehow'. For this condition there are only 130 reported cases and very little in the way of information on the subject. So my right eye, after 3 days hardcore steroids, came down a little but there is permanent optic nerve damage. That one has settled and I still think my vision is improving, but I know the optic nerve is pale and I'll never have it back fully. Now my left is swelling. I have a blind spot just below my center of vision. I've had another course of IV steroids and now I'm taking a months worth of tablets but because everything is so slow with this I can't tell if it's having any effect. Obviously I'm quite scared. I am an engineer and father of 2 with a mortgage to pay :-(. Not sure if I really have a question. I think I just want to open a conversation about it. Does anybody have experience of Optic Neuritis and how long did it take for the swelling to reduce and for vision to return after swelling went down? Thanks Ben
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@Blindben
@Blindben
 

Thank you for the reply Nutshell. I am under the care of Newcastle eye centre. They have done every test you can possibly imagine. MRI, CT, Lumbar punctures, everything. It's not your typical condition the consultants that have been involved have all told me this is very rare. It's not like diabetes retinopathy which is what most people expect when you have diabetes. What I have is swelling of the optic nerves. The optic nerve on the right was so severely swollen that unfortunately I basically lost it. The left is going the same way. The reason I ended up here is that optic neuritis seems to be common in MS. It's the first thing I was tested for when they found it. I know there are people here with experience of vision loss due to optic nerve swelling and I hope that they can perhaps shed some light on how long it took for their swelling to reduce. I think I'm well passed the 'eye drops' phase unfortunately. I have been in hospital twice now and the only reason I'm not having another dose of IV steroids is that not enough time has passed since my last dose so they can't give me those again.

@spunky
@spunky
 

Hi @blindben I know exactly how you feel! I had ON in both my eyes (right worse than the left). The Opthamologist was not able to diagnose so she referred me to a Neuro-Opthamologist and I got my ON diagnosis. My neurologist ran an evoked potential test which was irregular and my 3 MRI scan showed a total of 5 lesions. I was on IV steroids for 3 days and an oral taper afterwards. It took at least 3 weeks to get my vision back and another month or so to get it fully back. I have 20/20 vision again but I know my eyes were better before. Hang in there. Hope you are feeling better and you get your sight back soon! Spunky