Optic Neuritis
November 7, 2009 2:44 PM Subscribe
Looking for 1st hand experience of optic neuritis. Googled out and YANMD.
Two Opthamologists, 2 neurologists and now my gf, 57, is in hospital as I write this, had MRI & CAT scan, and is also on intravenous steroids but has gotten no answers. Docs say it's not MS, and only see a couple arteries (?) that are normal for her age.
She has whiplash from years ago and previous to this her neck was reallly hurting, cracking and causing severe headaches. She's been under tremendous stress the past 3 weeks; her mom having surgery, work, car breaking down, etc.
We're getting desperate. Anyone been in her shoes? Thanks.
Two Opthamologists, 2 neurologists and now my gf, 57, is in hospital as I write this, had MRI & CAT scan, and is also on intravenous steroids but has gotten no answers. Docs say it's not MS, and only see a couple arteries (?) that are normal for her age.
She has whiplash from years ago and previous to this her neck was reallly hurting, cracking and causing severe headaches. She's been under tremendous stress the past 3 weeks; her mom having surgery, work, car breaking down, etc.
We're getting desperate. Anyone been in her shoes? Thanks.
I had a bout of optic neuritis two years ago. I -do- have MS, but such a mild case that I do not require medication.
I experienced blurriness and loss of color in my left eye only, and could not see blinking lights at all (brake lights on a car, for instance, did not register a change whether on or off). Reading was next to impossible.
It was definitely scary. After seeing an ophthalmologist and determining it was optic neuritis, I went to my neurologist. I was prescribed a "steroid blast" -- a home health nurse came to my house for three consecutive days and gave me a gram of steroids each day via IV.
I did not notice a difference right away, but within a week or so, my vision was mostly back to normal. Colors are still slightly more dull in my left eye, but then I'm not absolutely sure it wasn't that way prior to the optic neuritis! I didn't compare before then.
Blinking lights now register just fine, there has been no residual blurriness, and I see in color. They offered me no explanation other than "sometimes this just happens" and that it is statistically more likely to happen to someone with MS.
Not sure if any of that is useful; please do contact me via private message with any questions! Sending good wishes to your girlfriend.
posted by ebee at 7:08 PM on November 7, 2009 [1 favorite]
I experienced blurriness and loss of color in my left eye only, and could not see blinking lights at all (brake lights on a car, for instance, did not register a change whether on or off). Reading was next to impossible.
It was definitely scary. After seeing an ophthalmologist and determining it was optic neuritis, I went to my neurologist. I was prescribed a "steroid blast" -- a home health nurse came to my house for three consecutive days and gave me a gram of steroids each day via IV.
I did not notice a difference right away, but within a week or so, my vision was mostly back to normal. Colors are still slightly more dull in my left eye, but then I'm not absolutely sure it wasn't that way prior to the optic neuritis! I didn't compare before then.
Blinking lights now register just fine, there has been no residual blurriness, and I see in color. They offered me no explanation other than "sometimes this just happens" and that it is statistically more likely to happen to someone with MS.
Not sure if any of that is useful; please do contact me via private message with any questions! Sending good wishes to your girlfriend.
posted by ebee at 7:08 PM on November 7, 2009 [1 favorite]
I'd be interested in a second opinion as it could very well be MS which is often aggravated by stress. It's difficult to diagnose, but it sounds like they are treating her as though she has it (ie steroids etc). I have MS, never had optic neuritis but I do know it's a really typical classic first symptom of MS. They usually won't diagnose until there are two separate "events" in both time and space.
Not trying to freak you out, just thought I'd throw that out there.
/IANAD
posted by smartypantz at 2:20 AM on November 8, 2009
Not trying to freak you out, just thought I'd throw that out there.
/IANAD
posted by smartypantz at 2:20 AM on November 8, 2009
Response by poster: Thanks. This may sound selfish but my former wife had MS and I was with her beginning to end; she died when she was 35 of complications from MS.
That aside; this is our 2nd opinion and they say she is "too old" for MS!
Ebee: You exactly described her! She's had the 3 days of IV steroids, and another MRI last night but vision is worse and pain in eye socket, nose and across forehead.
Pain lessened after they gave her a muscle relaxant.
Smartypantz: She's had 2 opinions and looking for a 2nd neurologist. Her insurance sucks.
I guess we want to know if it gets better? Does it re-occur?
posted by jara1953 at 6:31 AM on November 8, 2009
That aside; this is our 2nd opinion and they say she is "too old" for MS!
Ebee: You exactly described her! She's had the 3 days of IV steroids, and another MRI last night but vision is worse and pain in eye socket, nose and across forehead.
Pain lessened after they gave her a muscle relaxant.
Smartypantz: She's had 2 opinions and looking for a 2nd neurologist. Her insurance sucks.
I guess we want to know if it gets better? Does it re-occur?
posted by jara1953 at 6:31 AM on November 8, 2009
I had optic neuritis in September of 2000. On diagnosis I was admitted to hospital. I was told it's often the first manifiestation of MS, but does not necessarily mean you have or will develop MS. I found that terribly distressing at the time, as all I really knew about MS is that it can cause blindness, incontinence and leave you in a wheelchair. These are all worst case scenarios and many people live very normal & otherwise healthy active lives with MS.
I was given a spinal tap & an MRI, and the gamut of neurological tests (hammer on the knee, stroking the foot, gait observation, touching my nose with my eyes closed, following a pen with my eyes, etc etc). The optic nerve inflammation was obvious, but there was nothing else going on in my brain & the spinal tap was clear.
The vision in my left eye was just a big grey blur. Not particularly paingful. I spent one night in hospital, then was sent home the following day even though I was still on record as an inpatient. (This was part of a program called Hospital At Home.) Once a day for 4 days a district nurse would come over & administer the IV steroids (so IV treat ment was for 5 days in total). I then was "discharged". I continued on a tapering dose of oral steroids for a further 3 weeks. It tooks a couple of months, but my vision slowly returned to it's usual state of myopia with no lasting effects.
A few years later I was diagnosed with MS after developing further symptoms. I've never had a recurrance of optic neuritis though.
I know it's frustrating to not have the answers you seek, but I expect the reason the doctors aren't giving you answers is that there is just no way to predict how things are going to pan out. Your partner might be having a one off episode related to all the stress she has had recently. By "arteries" I'm going to guess you mean lesions/plaques showing up on the MRI? I am certainly not a neurologist but with what I've learnt of MS I'd hazard a guess that at her age, if her scans/other tests are normal then that sounds very promising. MS usually first shows up around 20 - 40 with 30ish being very common. If she is 57 and hasn't had any signs or symptoms previously, it might be more likely that she's having a one-off episode, of if she does have another condition, it's likely to be very mild and slow.
posted by goshling at 9:47 AM on November 8, 2009
I was given a spinal tap & an MRI, and the gamut of neurological tests (hammer on the knee, stroking the foot, gait observation, touching my nose with my eyes closed, following a pen with my eyes, etc etc). The optic nerve inflammation was obvious, but there was nothing else going on in my brain & the spinal tap was clear.
The vision in my left eye was just a big grey blur. Not particularly paingful. I spent one night in hospital, then was sent home the following day even though I was still on record as an inpatient. (This was part of a program called Hospital At Home.) Once a day for 4 days a district nurse would come over & administer the IV steroids (so IV treat ment was for 5 days in total). I then was "discharged". I continued on a tapering dose of oral steroids for a further 3 weeks. It tooks a couple of months, but my vision slowly returned to it's usual state of myopia with no lasting effects.
A few years later I was diagnosed with MS after developing further symptoms. I've never had a recurrance of optic neuritis though.
I know it's frustrating to not have the answers you seek, but I expect the reason the doctors aren't giving you answers is that there is just no way to predict how things are going to pan out. Your partner might be having a one off episode related to all the stress she has had recently. By "arteries" I'm going to guess you mean lesions/plaques showing up on the MRI? I am certainly not a neurologist but with what I've learnt of MS I'd hazard a guess that at her age, if her scans/other tests are normal then that sounds very promising. MS usually first shows up around 20 - 40 with 30ish being very common. If she is 57 and hasn't had any signs or symptoms previously, it might be more likely that she's having a one-off episode, of if she does have another condition, it's likely to be very mild and slow.
posted by goshling at 9:47 AM on November 8, 2009
I don't think the docs would use "arteries" to refer to CNS lesions or plaques, unless you misheard a word other than arteries. They might have been looking at the arteries in her retina, because those are often examined when a person has rapid vision changes. Normal = good in that case, because artery damage in the retinas is hard to fix. You're totally within your rights to ask the doctors to clarify what that was about -- bring it up next time one comes through the hospital on rounds.
The person I'm close to who had optic neuritis was eventually diagnosed with MS, but her vision was back to normal about 3 weeks after the symptoms started even without steroid treatment. With the MS diagnosis there is always the possibility of these symptoms reoccurring if another attack hits the optic nerve, but so far she's had no similar troubles. And as others have said, at your gf's age it seems unlikely to be MS.
Wikipedia claims that in addition to MS, optic neuritis can also be caused by "viral-bacterial infections (e.g. herpes zoster), autoimmune disorders (e.g. lupus), chloramphenicol, and the inflammation of vessels (vasculitis) nourishing the optic nerve." Again, next time the doctor comes by on rounds in the hospital, ask what other causes they are considering and checking for. It might help to keep a notebook and make a list of things to ask the doc, because they usually only stop by for a quick couple minutes and it's easy to forget what you wanted to say.
Finally, on the off chance that it could turn out to be a late-manifesting case of MS, please know that treatments have come a LOOOONG way in the last 20-30 years. (I'm assuming based on your current age vs. the age of your wife in the story that it has been a while since that happened.) Please don't be scared off by your memories of what happened to your wife, because the experience of having MS now is vastly different and more hopeful now.
I'm sending hopeful wishes your way for a satisfactory answer and a good outcome. Take care.
posted by vytae at 10:42 AM on November 8, 2009
The person I'm close to who had optic neuritis was eventually diagnosed with MS, but her vision was back to normal about 3 weeks after the symptoms started even without steroid treatment. With the MS diagnosis there is always the possibility of these symptoms reoccurring if another attack hits the optic nerve, but so far she's had no similar troubles. And as others have said, at your gf's age it seems unlikely to be MS.
Wikipedia claims that in addition to MS, optic neuritis can also be caused by "viral-bacterial infections (e.g. herpes zoster), autoimmune disorders (e.g. lupus), chloramphenicol, and the inflammation of vessels (vasculitis) nourishing the optic nerve." Again, next time the doctor comes by on rounds in the hospital, ask what other causes they are considering and checking for. It might help to keep a notebook and make a list of things to ask the doc, because they usually only stop by for a quick couple minutes and it's easy to forget what you wanted to say.
Finally, on the off chance that it could turn out to be a late-manifesting case of MS, please know that treatments have come a LOOOONG way in the last 20-30 years. (I'm assuming based on your current age vs. the age of your wife in the story that it has been a while since that happened.) Please don't be scared off by your memories of what happened to your wife, because the experience of having MS now is vastly different and more hopeful now.
I'm sending hopeful wishes your way for a satisfactory answer and a good outcome. Take care.
posted by vytae at 10:42 AM on November 8, 2009
I'm so sorry to hear about your former wife, and I didn't mean to sound callous regarding the MS. Do you mind if I ask what complications of MS took her? As a young woman (early thirties) with MS that sort of freaked me out, even though I am pretty asymptomatic.
Take care, and I hope everything works out for your current girlfriend, it can be a scary time not knowing what's going on. She is really lucky to have you!
posted by smartypantz at 10:10 PM on November 8, 2009
Take care, and I hope everything works out for your current girlfriend, it can be a scary time not knowing what's going on. She is really lucky to have you!
posted by smartypantz at 10:10 PM on November 8, 2009
Response by poster: Hi,
Just a note to say thanks, the problem is still ongoing with no diagnosis, she's going Sat. for a 3rd MRI.
posted by jara1953 at 2:40 PM on December 8, 2009
Just a note to say thanks, the problem is still ongoing with no diagnosis, she's going Sat. for a 3rd MRI.
posted by jara1953 at 2:40 PM on December 8, 2009
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posted by vytae at 3:10 PM on November 7, 2009