@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.