So, I'm a researcher and questioner at heart, and make certain to completely understand the facts about a topic rather than one account here or there that says what I want in my heart to be true. That said, I've dug up quite a bit about ON and what to expect (ok, well, I know you can't really "expect" anything with ON since much of it is a wait and see sort of situation, but I digress...), and my question is more of a "what would you do now?" advice type of inquiry.
Facts:
2 weeks ago today, woke with an odd lack of sharpness to my vision. Not terrible at this point really, but definitely not quite right. My contacts were past their disposal date, so I thought eh, maybe it's that -- switching to fresh ones didn't help. Squinting didn't help. Rubbing my eyes didn't help. I was pretty sure it was ON, though I'd never had it before.
Called my neuro 1st. Talked to the NP, who advised giving it 24 to 48 hours, but no more, to see if it resolves itself. She also instructed me to call back if it got worse within that window as well.
2 hours later - much worse. Went from blurriness at the edges to like I was looking through a heavily frosted glass shower door. Called neuro back, got NP again, who said she would talk to him and call back.
20 mins later - neuro calls himself (highly unusual, btw). Asks me some questions, says sounds like ON, asks me to see if I can get in to see an opthamologist. Told me, at this point, I am just looking for confirmation of ON and not something else, so just find one you can see for that and call me back ASAP.
Highly rated opthamologist office nearby has an opening in an hour, due to a cancellation. I go in, the techs giving me those prelim tests were acting like I was a sideshow with my pupil reaction (dilating crazily more so when I covered my good eye than it did with the penlight alone). Visual field test shows I can't see squat in the upper two quadrants of my right eye, and very little in the bottom two. Left eye is good as gold. They dilate my eyes, doc comes in, looks around in there, nods and says, yup, it's inflamed. ON it is. Then, things get weird. She was all wishy washy -- "Um, I guess I can give you prednisone. Not sure how much, ummmm..." Then counting on her fingers, shocked at how many pills it would start on, etc etc. (In my head, huh? This is highly rated? You'd think she never saw ON once in her whole life. Is that possible? She wasn't a super young doc..). Finally, she says, I'll call in 300, if you need more we can refill. I already decided I wasn't filling it without talking to neuro, so I just thanked her and left.
Called neuro back (this is still same day, before noon). Confirmed dx of ON to him. I tell him about her Rx of prednisone. He laughs and says, "you didn't fill it or take it, did you?" I say no. He says "good, there are two treatments for ON - neither of which really change the end outcome, I'll be honest, but one thing you never do is oral prednisone." I say "OK, what are they?" He says, "IVSM or nothing. IVSM will likely speed up the recovery, whatever recovery that may be, but either one will likely have you end up in the same spot. Up to you." I opt for IVSM. I don't really have too many side effects of it, and sick as it may sound, I could use a vacation away from home to get some homework and lesson planning done. (hey, at least I'm honest).
So I do the IVSM - 5000mg total, 750mg twice, then 500mg thereafter, every 8 hours. Go home on the oral taper. During my stay, my vision did get better, but hasn't returned to "normal" yet. I know it is still early, being only 2 weeks, and being that I am still tapering on the 'roids, etc. It is like I have a large greasy smudge on my eye, but if I really study what I see, it seems that my vision UNDER that smudge is clear. Like, I can read words, but the edges are stretched, or pulled. Still a buttload better than it was at its worst.
Ok, so that's the background.
Here's the question:
Should I still seek out a neuro-opthamologist to have in my back pocket, just in case this occurs again or does not continue to improve? Or is it a moot point now? I understand that having had two weeks go by, any tests I have done now will not be an indicator of my worst vision/nerve issues. I am not 100% confident in the tests that were taken at the optho's office that 1st day - she really did seem like a dope.
My neuro by the way, is one of the best - medical director and researcher of the MS specialty dept. (not just neuro) at a top US ranked hospital. He is obviously not a neuro-opthamologist, but lists optic neuritis as a area of concentration for research and treatment. I trust him completely, and he has not advised me whether or not to seek out a neuro-opthamologist. He told me to follow up with him in October, when enough time has gone by to more realistically see how far I've come. He said he thinks, based on how I responded, and based on years of patients, that I will continue to get better, but that it is not a promise he can make for certain. Based on that, I just don't know that it matters to go through a neuro-op visit, or if I should just so I'm "in the system" if this happens again.
What would YOU do?
Facts:
2 weeks ago today, woke with an odd lack of sharpness to my vision. Not terrible at this point really, but definitely not quite right. My contacts were past their disposal date, so I thought eh, maybe it's that -- switching to fresh ones didn't help. Squinting didn't help. Rubbing my eyes didn't help. I was pretty sure it was ON, though I'd never had it before.
Called my neuro 1st. Talked to the NP, who advised giving it 24 to 48 hours, but no more, to see if it resolves itself. She also instructed me to call back if it got worse within that window as well.
2 hours later - much worse. Went from blurriness at the edges to like I was looking through a heavily frosted glass shower door. Called neuro back, got NP again, who said she would talk to him and call back.
20 mins later - neuro calls himself (highly unusual, btw). Asks me some questions, says sounds like ON, asks me to see if I can get in to see an opthamologist. Told me, at this point, I am just looking for confirmation of ON and not something else, so just find one you can see for that and call me back ASAP.
Highly rated opthamologist office nearby has an opening in an hour, due to a cancellation. I go in, the techs giving me those prelim tests were acting like I was a sideshow with my pupil reaction (dilating crazily more so when I covered my good eye than it did with the penlight alone). Visual field test shows I can't see squat in the upper two quadrants of my right eye, and very little in the bottom two. Left eye is good as gold. They dilate my eyes, doc comes in, looks around in there, nods and says, yup, it's inflamed. ON it is. Then, things get weird. She was all wishy washy -- "Um, I guess I can give you prednisone. Not sure how much, ummmm..." Then counting on her fingers, shocked at how many pills it would start on, etc etc. (In my head, huh? This is highly rated? You'd think she never saw ON once in her whole life. Is that possible? She wasn't a super young doc..). Finally, she says, I'll call in 300, if you need more we can refill. I already decided I wasn't filling it without talking to neuro, so I just thanked her and left.
Called neuro back (this is still same day, before noon). Confirmed dx of ON to him. I tell him about her Rx of prednisone. He laughs and says, "you didn't fill it or take it, did you?" I say no. He says "good, there are two treatments for ON - neither of which really change the end outcome, I'll be honest, but one thing you never do is oral prednisone." I say "OK, what are they?" He says, "IVSM or nothing. IVSM will likely speed up the recovery, whatever recovery that may be, but either one will likely have you end up in the same spot. Up to you." I opt for IVSM. I don't really have too many side effects of it, and sick as it may sound, I could use a vacation away from home to get some homework and lesson planning done. (hey, at least I'm honest).
So I do the IVSM - 5000mg total, 750mg twice, then 500mg thereafter, every 8 hours. Go home on the oral taper. During my stay, my vision did get better, but hasn't returned to "normal" yet. I know it is still early, being only 2 weeks, and being that I am still tapering on the 'roids, etc. It is like I have a large greasy smudge on my eye, but if I really study what I see, it seems that my vision UNDER that smudge is clear. Like, I can read words, but the edges are stretched, or pulled. Still a buttload better than it was at its worst.
Ok, so that's the background.
Here's the question:
Should I still seek out a neuro-opthamologist to have in my back pocket, just in case this occurs again or does not continue to improve? Or is it a moot point now? I understand that having had two weeks go by, any tests I have done now will not be an indicator of my worst vision/nerve issues. I am not 100% confident in the tests that were taken at the optho's office that 1st day - she really did seem like a dope.
My neuro by the way, is one of the best - medical director and researcher of the MS specialty dept. (not just neuro) at a top US ranked hospital. He is obviously not a neuro-opthamologist, but lists optic neuritis as a area of concentration for research and treatment. I trust him completely, and he has not advised me whether or not to seek out a neuro-opthamologist. He told me to follow up with him in October, when enough time has gone by to more realistically see how far I've come. He said he thinks, based on how I responded, and based on years of patients, that I will continue to get better, but that it is not a promise he can make for certain. Based on that, I just don't know that it matters to go through a neuro-op visit, or if I should just so I'm "in the system" if this happens again.
What would YOU do?
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