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Optic Neuritis - messing with mind (pun intented)

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  • Optic Neuritis - messing with mind (pun intented)

    So anyone out there have any tips on the waiting game to see how bad your eye pain/sight is going to get? Diagnosed Fri b4 Memorial Day weekend -- told I need to get to a neuro optho ASAP... hah! ok so only appointment is 12 days from now and each day - slightly worse - slightly more painful. How on earth do you wait to see about if your gonna lose your vision even temporarily without it consuming you? Im trying humor "keeping an eye on it and watching for changes' - but Im scared.... any insight? UGH see -- another pun... take care all -- D

  • #2
    My optic neuritis lasted for over a month when I was first diagnosed. I didn't lose any vision but I could not turn my left eye at all and it was extremely painful on that side. I didn't even know it was MS, nor did I find out it was a symptom of MS until later.

    Adding my $.02 just to let you know that it is livable for a few weeks. OTOH, if it is really bad my ER experience with MS is that they are equipped and aware of how/ when to administer steroids to patients who come in with MS related symptoms.


    • #3
      Hang on in there, ibartist.

      It's not much fun, I know, especially with the pain. I had pain for about two weeks. A mixture of paracetamol & ibuprofen kept a lid on it so I could function without biting people's heads off, but I also found that using an eye patch helped me, too. Light entering my eye simply exacerbated the pain, so to block out the light meant that that I could not only control the pain better, but I could also start to adapt to living a monocular life, should I need to. (I was fantasising about enucleation with a corkscrew by this point!)

      My vision dropped to about 10 or 20%, but it didn't 'black out', it 'whited out' instead, like a completely overexposed photo. I think the eyepatch help calmed this too.

      I didn't know how much vision I would be left with (I still don't really - I am 4 months in to optic neuritis), but I made sure that I knew all the tips & tricks for adapting to life with one eye. That's what kept me distracted, anyway.

      I'm sorry you have to wait for your appointment for so long. My sight went on Jan 22nd, and I 'saw' (Ha!) the neuro for the first time 3 weeks later. By this time, the pain had gone - but my neuro suggested that if it returned, then I should ask for something like amitriptyline - used for neuropathic pain. Vision continued to worsen after that, before it started to improve again. It's back up to 80-90% most days, unless the sun is really bright or I am doing exercise.

      Don't bank on being prescribed steroids. Since the study in 2013, many neuros have stopped giving it for ON, if you have no other symptoms.

      Hope it eases soon.


      • #4
        My experience with optic neuritis was over a decade before I was diagnosed. I just one day, in around 1990 or so had color distortion and the pain in the eye. I went to an eye doctor who told me it would just pass....these were the days when doctors would not tell you what they suspected, and actually I am glad they did not tell me they suspected MS as it was pre-MS treatment days. As I remember, it lasted a few weeks, pain slowly abated, and I was basically able to function. No steroids or any other treatment was used. I had a similar episode a year later ( both during July, and probably heat induced...) and just rode it out. For me I know I was lucky....lingering effects are alittle color distortion, and some minor vision loss...
        Be thankful. Dream Big. Never Give Up.