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Shared experience of optic neuritis

Hi

i have just been diagnosed with optic neuritis. The sight in my right eye went from 20/20 to virtually nothing within 2 days. Whilst gradually improving, 6 weeks on, my vision has still not fully returned. This came out of the blue, and prior to this I have always enjoyed good health.

I wanted to find out about other people’s experience of recovery from neuritis. I have a couple of other strange things happening… Constant pins and needles in one foot, and most annoyingly, a feeling of being ‘squeezed’ in the left hand side of my head all the time. Has anyone else experienced this? Does it go away?

An MRI showed ’ more unidentified bright objects’ (what the neurologist called them), than expected for my age, with a pattern which may or may not be linked with MS, but, of course, there is no diagnosis.

This has all been a bit of a shock, and I’m struggling with what’s happened.

Any shared experience would be good to hear. Good or bad… I just want to have some idea of what to expect.

Hi Outdoor girl

I have had three episodes of optic neuritis. The first was in 2010, the 2nd in 2014 and the last one was last year. The last episode was the worst and my eyesight did not return to normal for at least 6 months. I also have Uhthoffs syndrome, which basically means that when I get too hot, my vision goes blurry, as a result of the past episodes of optic neuritis. However, my vision returns to normal when I cool back down.

i also sometimes have a feeling on my head, which feels like it’s bruised. It feels as if I have a bruise and can last for a few days. I have no idea if this is anything to do with my ms.

I hope your ON continues to improve.

Ang

My first experience of ON was in 1990 when I lost the sight in my right eye temporarily. Like you, that eye went blind and took about 5 weeks to return to about 90% of its previous visual acuity. However, colours are less sharp and blander than previously although my brain has learnt to compensate over time. The only treatment I was offered was steroids, which I later regretted taking as the side effects were disconcerting. I raised the question of MS at the time but, as this was the Dark Ages, my concerns were summarily dismissed.

Since that time I have had two further episodes, both in the same eye, approximately ten years apart. These two attacks were mild and only resulted in temporary greying of my sight. Both cleared within about a week each time.

I was not diagnosed with PPMS until 2014 after an MRI scan on the brain and upper spinal cord. My previous MRI scan in 2010 was inconclusive. It was not just the third bout of ON which made me seek a neurological assessment in 2010 but a progression of other symptoms such as poor balance, bladder issues and difficulty walking.

You say that you have seen your neurologist after your MRI but that you have not been diagnosed with MS. How have things been left? Have any other tests been recommended such as Evoked Potentials or a Lumbar puncture? Being left in limbo is very alarming and I hope this does not happen to you. Do your best to winkle as much information as you can from the neurologist as they are often tricky to pin down.

Best wishes

Alun

Thank you both Ang and Alan for sharing your experiences.

To answer your question Alun, it has been left that I go back to see the neurologist 5 weeks from now. I understand from the research I have done that I cannot be diagnosed with MS based on one episode. I had some numbness in one foot in 2005, and a bad episode of vertigo in my 20’s ( but I seem to remember that was due to an inner ear infection…it was so long ago!), so there really is nothing else to go on.

No other tests were mentioned.

I suppose one of the key things for me to ask the neurologist is whether or not I am now considered as high risk for MS going forward. Whilst I realise it’s not the end of the world, it does make me think about the need to ‘future proof’ my family. I work full time in a job which can be stressful- it also involves staring at a computer for most of the day, which I’m finding difficult due to the strange feelings in my head and reduced vision in my eye, and the worry that my other eye might ‘go’. ( I know that this is not entirely a rational fear, as ON classically affects one eye, but it’s there nonetheless).

If you can think of any other specific question I should ask, let me know. The neurologist seems pretty human to me, if a bit vague, but I guess he can only work within the agreed guidelines for diagnosis.