Neurological Disorders :: Discolouration On Optic Nerve With Septo-Optic Dysplasia


May 19, 2016

I have Septo-optic dysplasia, and I'm lucky if I ever get to see someone who's even heard of it because it's apparently one of those rare and awkward conditions with varying symptoms. But basically, in my case, the nerves in my eyes didn't develope well or at all. 

I have 6/60-6/48 vision in my right eye and 0 in my left eye; as in I don't even see black or anything at all. I don't think light could ever get in there.

My most recent check up at the Optician showed some discoloration on the optic nerve in my left eye (the blind eye). It appeared black, apparently, which my Optician said meant it had been there a long time, as opposed to grey? But no one seems to know if this is normal for an optic nerve that never formed properly. 

Apparently the discoloration is not mentioned in any of my letters on record, though. Is that weird? That's the only thing making me worried. Some people say it should be obvious so not included, but others say that means it's new?

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However, the last couple of weeks I have been getting pins and needles all over my body, mainly in arms and legs. I've also had general aching pains.

I have read online about symptoms and they point to all kinds of things, Fibromyalgia, Anxiety and possibly MS. As you can imagine this has really scared me as I have read that problems with the optic nerve can also be related.

Has anyone else had these symptoms or are they too few for me to be making assumptions?

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I was referred onto the eye specialist again for further checks and i was told i have Optic Neuritis, and was told that my eyesight will probably get worse and been advised to return to the opticians in a few months to have them checked out again.

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Since the treatment my eye is now constantly in pain fluctuating from minor to pretty debilitating. I am in sunglasses all day long except with indoors with no windows.... Or lights... Due to light sensitivity. The strangest addition to the neuritis symptoms, however is that as the day progresses (and my eye is used) the whole left side of my head goes numb. Since the MS work up beginning in Feb, I have only have left side facial numbness once for 5 hours. Now, it's daily. It certainly worsens as my eye gets tired... And there are bouts of shooting pain through the whole left side of my head that are very light and sound sensitive.

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After posting here a earlier this month about whether or not to go see a neuro, I had made an appointment with an MS Specialist. I see him on June 3rd.

Any idea what thinning of the optic nerves can mean?

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