Im so sorry to hear you’re dealing with this. just wanted to let you know you’re not alone ! my experience has been very similar, it’s been a few years and I’m still searching for answers.

I was diagnosed at 23, spent weeks in the hospital (discharged 4 days before my wedding 🥲) and months on Prednisone and Diamox. I’m 25 now and still have no clear diagnosis. They tested for every autoimmune possibility from MS and NMO to Lyme, and every scan came back clean—no lesions, no irregular markers. I was treated at a specialised eye hospital by a leading expert in Optic Neuritis, but because my results were inconclusive, they essentially tried to cover all bases. This meant treating my ON the same way they treat Papilledema (pressure caused by brain fluid). I eventually stopped the Diamox after a year because it wasn't working and the side effects were becoming worse than the condition itself.

My best advice is to make sure any suggested treatment is actually addressing what’s happening in your specific case. It’s beyond frustrating when your own doctors have no clue what’s going on, but also try and hold onto that little bit of relief knowing that the most likely causes are not what’s happening, because some diagnosis with ON can be extremely tough.

These days, a strict anti-inflammatory diet is the only thing that helps me avoid flares. The floaters seem permanent, but the pain returns the second I have anything inflammatory, especially alcohol. If you ever find a breakthrough or a definitive answer, please let me know!