@mtvesuvio 

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mtvesuvio

Sort of newly diagnosed, optic neuritis

Hi I started losing vision 6 weeks 4 days ago to be precise. My left eye is has a gray cloud over the central vision - peripheral is ok. My right eye has blurring on the edges, so if I look at a word, the last letters come in and out of vision. I had IV steroids at 12 days - they did nothing but made me really ill. Had them again 2 weeks later and saw some improvement. I had a black hole in my vision at that point, and people would appear out of nowhere and disappear. That seems to be better. I'm really worried that my vision is now getting worse - it seems more blurry. Is that normal during recovery? Am I being too impatient - 6 weeks and 4 days after onset. Had an MRI and it showed an enlargement of the left optic chiasm extending posterior into the optic track and anterior into the optic nerve. They also saw a lesion at C4/C5 and anterior cord and multiple periventricular white matter lesions. (I love that they sent this in a letter to my doctor copying me in - but no one has discussed these results with me). LP also showed 0 white cells, oligoclonal bands in CSF only, so they have put in the letter new diagnosis of MS. Hopefully someone will get in touch soon to arrange an appointment to actually discuss this with me. In the meantime - has anyone else had inflammation in the chiasm - I read this is rare. My left eye was mostly affected, my right only started being affected slightly, but the right hasn't improved. The doctor said the right should improve fully - but he wasn't sure if I had knackered the left (that was my GP). Left me full of hope. I know 6 weeks and 4 days is not a long time after the onset of ON, but just wanted to get some hope or something. Will the cloud ever lift? Seems like all contrast has gone (if i even know what contrast means) and the left has 0 colour in the central vision. 2 years ago - 2016 I had tingling and a cold sensation in my arm - which they put down to Vit D deficiency, after a big dose that disappeared. I'm getting that might be the C4/C5 lesion. Thank you in advance to anyone who responds. Just feel so scared and left out on a limb awaiting some information. The hospital don't like if you call up to ask a question.
@Vixen

Hello @mtvesuvio, good to meet you. What a horrible time you’ve been through. Your experience at finding out life-changing news by letter is unforgivable, and yet, sadly it goes on. The tingling and cold feeling was most likely a pre-cursor. I’ve been fortunate in not having issues with optic neuritis, so afraid I can’t give advice. But I’m sure those in the know will rock up soon. Stay strong, keep as healthy as you can, and hopefully you’ll find comfort and support through Shift. We’ve all been where you are, so you’re in great company! X

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@Stumbler

Hi @mtvesuvio and welcome. There's some details here about Optic Neuritis :- https://www.mstrust.org.uk/a-z/optic-neuritis There have been accounts on this forum of recovery from Optic Neuritis taking up to 12 months or more, so stay positive. Do you have a follow-up appointment booked with your Neuro? Although this wouldn't detract from the poor communication that you've suffered. You will be allocated a specialist MS Nurse, as a point of contact for all things MS. If you will not be seeing the Neuro in the near future, you should contact your local MS Nurse direct to discuss the way forward. They can be located here :- https://www.mstrust.org.uk/about-ms/ms-services-near-me

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