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RAPD without ON? Really???
So here's the update, dudes.
I saw my neuro for my third appointment yesterday. Everything was ticking along nicely until she did the swinging flashlight test. She did it for about 5 minutes, then asked me if I ever had optic neuritis.
I told her that I only had some mild right eye pain in August 2011 (during my only attack) for 2 weeks, but my VEP and RAPD tests done in November 2011 were normal. My opthamologist said the same thing (all normal, no retinal detachment). I did not have blurred vision or loss of colour saturation at all when I had the pain in August. The diagnosis was that I did not have ON.
So yesterday my neuro tells me that she sees RAPD in my right eye that wasn't there before. To be safe she ordered an MRI of the brain (with contrast) to check for new lesions, but she says new lesions are highly unlikely. Then she says that it is possible that I had an episode of ON at some point since November with no symptoms (so I wouldn't know about it).
So basically, I had symptoms of ON with no clinical findings in the summer/fall of 2011 and now I have clinical findings of ON with no symptoms???
I love my neuro and I trust her, but WTF? I need help from my trusty MedHelp reinforcements. What gives?
Thanks, as always!
I saw my neuro for my third appointment yesterday. Everything was ticking along nicely until she did the swinging flashlight test. She did it for about 5 minutes, then asked me if I ever had optic neuritis.
I told her that I only had some mild right eye pain in August 2011 (during my only attack) for 2 weeks, but my VEP and RAPD tests done in November 2011 were normal. My opthamologist said the same thing (all normal, no retinal detachment). I did not have blurred vision or loss of colour saturation at all when I had the pain in August. The diagnosis was that I did not have ON.
So yesterday my neuro tells me that she sees RAPD in my right eye that wasn't there before. To be safe she ordered an MRI of the brain (with contrast) to check for new lesions, but she says new lesions are highly unlikely. Then she says that it is possible that I had an episode of ON at some point since November with no symptoms (so I wouldn't know about it).
So basically, I had symptoms of ON with no clinical findings in the summer/fall of 2011 and now I have clinical findings of ON with no symptoms???
I love my neuro and I trust her, but WTF? I need help from my trusty MedHelp reinforcements. What gives?
Thanks, as always!
Best Answer
Thanks for your comments, everyone. I'll post the results of my brain MRI when it happens.
I am quite happy with my neuro. He runs the MS Center at the hospital I go to, which is really well known (at least in Canada) for its Brain Sciences division. They knew all the signs to look for when I presented at the Emergency Room with transverse myelitis. I'm so saddened by some of the limboland stories I have seen out here.
I am quite happy with my neuro. He runs the MS Center at the hospital I go to, which is really well known (at least in Canada) for its Brain Sciences division. They knew all the signs to look for when I presented at the Emergency Room with transverse myelitis. I'm so saddened by some of the limboland stories I have seen out here.
COMMUNITY LEADER
Hi Mary,
I did try to break my neck once, i head butted the bottom of a concrete pool but that was almost 30 years ago and apart from it being a really scary experience and whiplash, there's been no damage or lasting anything of anything. I cant actually read an eye chart, totally double, umm when i get the eye pressure and something about eye moisture (not sure what its called) checked, both are always perfectly normal and i haven't used drops or anything, ever actually.
See here's the thing, untill i read whats above id really thought i was seeing different sized pupils because of the diplopia, making it difficult to see anything clearly enough, even straining i still see one image on top of the other. Without glasses i can't see peoples facial features clearly enough on the tv, real life is kind of worse, the smaller the thing i'm trying to see the worse it is for me to work out.
Without magnifying glasses i still cant read text very well and thats still using a big screen and largest text options, eg your Associated still looks more like ABBOOATED its a bit of a guessing game lol oh hang on, I'm actually thinking i'm probably not wearing my glasses when i 'think' i'm seeing it because i'm usually washing my face or putting makeup on when i notice it, lol i'll have to see (no pun intended) if i still 'think' i see it with them on.
Hmmmmm i need lots of things re-assessed least of which is my sight, I was suppose to get prism glasses but i got peeed off when they screwed me up with another patient and a few other things, like the optomotrist not being able to read the script she wrote, or why because there was nothing written down in my file, lol I;ve avoided dealing with all the crap of getting to a specialist. lol my eye balls bounce like the rest of me, i wish glasses would fix everything lol wouldn't it be nice!! :-)
Thanks...........JJ
I did try to break my neck once, i head butted the bottom of a concrete pool but that was almost 30 years ago and apart from it being a really scary experience and whiplash, there's been no damage or lasting anything of anything. I cant actually read an eye chart, totally double, umm when i get the eye pressure and something about eye moisture (not sure what its called) checked, both are always perfectly normal and i haven't used drops or anything, ever actually.
See here's the thing, untill i read whats above id really thought i was seeing different sized pupils because of the diplopia, making it difficult to see anything clearly enough, even straining i still see one image on top of the other. Without glasses i can't see peoples facial features clearly enough on the tv, real life is kind of worse, the smaller the thing i'm trying to see the worse it is for me to work out.
Without magnifying glasses i still cant read text very well and thats still using a big screen and largest text options, eg your Associated still looks more like ABBOOATED its a bit of a guessing game lol oh hang on, I'm actually thinking i'm probably not wearing my glasses when i 'think' i'm seeing it because i'm usually washing my face or putting makeup on when i notice it, lol i'll have to see (no pun intended) if i still 'think' i see it with them on.
Hmmmmm i need lots of things re-assessed least of which is my sight, I was suppose to get prism glasses but i got peeed off when they screwed me up with another patient and a few other things, like the optomotrist not being able to read the script she wrote, or why because there was nothing written down in my file, lol I;ve avoided dealing with all the crap of getting to a specialist. lol my eye balls bounce like the rest of me, i wish glasses would fix everything lol wouldn't it be nice!! :-)
Thanks...........JJ
Hey SM. RAPD isn't the cause of your unequal pupil size. You can take a look at the page I referenced to find out why.
Unequal pupil size is actually a symptom called anisocoria. It can be normal when the difference is small and/or fleeting as you describe. It sometimes occurs with eye drop use or from substances that accidentally enter an eye. It is seen most often with head trauma, bleeding, seizures and tumors but ISN'T usually ASSOCIATED with MS.
Is there any chance you have developed astigmatism in one or both eyes? That gives the type of ghosted image you describe and can make seeing clearly difficult even though you may be able to 'read' an eye chart well enough to test out with normal or near normal vision.
In addition, if your eyes are dry (and they can BE dry even if they don't FEEL dry to you) your visual acuity is likely to fluctuate.
Hope you all get your vision issues worked out. I know from personal experience how frustrating it is not to see well. I spend years being told my vision was as good as it was going to get. A few months back I ditched my ophthalmologist and found an optometrist who took the necessary time to do a proper exam and refraction. I'll never have 20/20 vision again but I do read standard size print now wearing glasses alone - no additional magnifier. It's WONDERFUL to say the least!
Mary
Unequal pupil size is actually a symptom called anisocoria. It can be normal when the difference is small and/or fleeting as you describe. It sometimes occurs with eye drop use or from substances that accidentally enter an eye. It is seen most often with head trauma, bleeding, seizures and tumors but ISN'T usually ASSOCIATED with MS.
Is there any chance you have developed astigmatism in one or both eyes? That gives the type of ghosted image you describe and can make seeing clearly difficult even though you may be able to 'read' an eye chart well enough to test out with normal or near normal vision.
In addition, if your eyes are dry (and they can BE dry even if they don't FEEL dry to you) your visual acuity is likely to fluctuate.
Hope you all get your vision issues worked out. I know from personal experience how frustrating it is not to see well. I spend years being told my vision was as good as it was going to get. A few months back I ditched my ophthalmologist and found an optometrist who took the necessary time to do a proper exam and refraction. I'll never have 20/20 vision again but I do read standard size print now wearing glasses alone - no additional magnifier. It's WONDERFUL to say the least!
Mary
COMMUNITY LEADER
This is interesting, I can't really add anything meaningful but i think i've just learnt something thats been odd for awhile. Pre 09 (my big bang lol) i'd only ever experienced intermittent blurred focusing probs and i still had perfect 20/20 vision. After 09 i had a constant slight overlap with one image slightly higher than the other that created a goasting affect like a bad photo copy, I dont think thats classed as a true double.
In the first year after my vision changed, every now and then i'd notice different sized pupils, it never lasted very long (seconds not minutes) then they'd become the same again, at first i thought it was just the semi double making one look bigger than it really was. I think if it stayed 2 different sizes for long enough, i'd of taken more notice but it was never like that.
Since 09, my vision has become an obvious double, one image is still higher than the other but more so eg sometimes I'll clearly see another set of eyes on someones forhead lol freaky odd. Lost sight in my right eye, nastigmas (sp), diplopia and I do get ice pick type eye pain and light especially sunlight has been a progressing problem for years.
With the pupil size difference, i notice it most in my bathroom because the mirror is placed badly, there is a shadow on one side and bright reflected light from the overhead light on the other half, its a pain. Depending on how I'm standing changes the size of my pupils, which is pretty normal but if i stand half in the light and half out, the pupils are different sized.
When i've heard about this type of thing I thought the different sizes was suppose to be hugely different, one big and one small and they stayed like that for ages. What i get is more suttle, only about a quarter bigger and then they go back to the same size lol I can vouche for how difficult it is to catch.
Technically i've not had a dx of ON, i do have a slight paling of the optic nerve but its thought to be "possibly early glacoma (sp)" lol i cant remember which eye it is but i didn't see different pupil reactions to light until way after my sight first changed. So if what i'm experiencing is in line with RAPD then for me it didn't show up until sometime after.
Cheers........JJ
PS i debated if i should post this or not but i'll put it up because it may make sense to someone lol
In the first year after my vision changed, every now and then i'd notice different sized pupils, it never lasted very long (seconds not minutes) then they'd become the same again, at first i thought it was just the semi double making one look bigger than it really was. I think if it stayed 2 different sizes for long enough, i'd of taken more notice but it was never like that.
Since 09, my vision has become an obvious double, one image is still higher than the other but more so eg sometimes I'll clearly see another set of eyes on someones forhead lol freaky odd. Lost sight in my right eye, nastigmas (sp), diplopia and I do get ice pick type eye pain and light especially sunlight has been a progressing problem for years.
With the pupil size difference, i notice it most in my bathroom because the mirror is placed badly, there is a shadow on one side and bright reflected light from the overhead light on the other half, its a pain. Depending on how I'm standing changes the size of my pupils, which is pretty normal but if i stand half in the light and half out, the pupils are different sized.
When i've heard about this type of thing I thought the different sizes was suppose to be hugely different, one big and one small and they stayed like that for ages. What i get is more suttle, only about a quarter bigger and then they go back to the same size lol I can vouche for how difficult it is to catch.
Technically i've not had a dx of ON, i do have a slight paling of the optic nerve but its thought to be "possibly early glacoma (sp)" lol i cant remember which eye it is but i didn't see different pupil reactions to light until way after my sight first changed. So if what i'm experiencing is in line with RAPD then for me it didn't show up until sometime after.
Cheers........JJ
PS i debated if i should post this or not but i'll put it up because it may make sense to someone lol
Hey Sidesteps - I was diagnosed with CIS highly suggestive of MS in July 2011 and I started Copaxone about 2 weeks later. My only attack ended sometime in mid-September.
Hiya!!!
I have similar past experience as Jane...though I just had ON in January/February, this time the RAPD and there was a blind spot on my visual field that did not show up in October. I am pretty sure though RAPD has been around for a year or so...
I have had two VEPs (early last year during my dx process) that came back with amplitude abnormalities but no latency. I have wondering if the tests were administered incorrectly. I am not sure what was wrong with my eye for nearly 10 months but the symptoms have been very similiar to ON at times. I can barely tell the difference but my doctor has mentioned she thinks it was atypical TN.
The ON in Jan/Feb was classic. I had pretty severe eye pain for 36 hours about 4 days after I noticed decreased vision and changes in my color saturation. They diagnosed ON. I started IVSM for 5 days. It improved nearly immediately (less some visual acuity issues).
I sometimes wonder if there is a bit of a delay in damage showing up in tests. It is very possible you didn't have pain with your ON and didn't notice; sometimes ON can be very very mild. My case of ON was fairly mild but obvious. RAPD can be intermittent (as are most of our symptoms) and show when flared and better when not.
It's all so confusing but I think your Neuro is communicating she sees damage and would like to follow-up. Are you diagnosed and are you on a DMD?
I have similar past experience as Jane...though I just had ON in January/February, this time the RAPD and there was a blind spot on my visual field that did not show up in October. I am pretty sure though RAPD has been around for a year or so...
I have had two VEPs (early last year during my dx process) that came back with amplitude abnormalities but no latency. I have wondering if the tests were administered incorrectly. I am not sure what was wrong with my eye for nearly 10 months but the symptoms have been very similiar to ON at times. I can barely tell the difference but my doctor has mentioned she thinks it was atypical TN.
The ON in Jan/Feb was classic. I had pretty severe eye pain for 36 hours about 4 days after I noticed decreased vision and changes in my color saturation. They diagnosed ON. I started IVSM for 5 days. It improved nearly immediately (less some visual acuity issues).
I sometimes wonder if there is a bit of a delay in damage showing up in tests. It is very possible you didn't have pain with your ON and didn't notice; sometimes ON can be very very mild. My case of ON was fairly mild but obvious. RAPD can be intermittent (as are most of our symptoms) and show when flared and better when not.
It's all so confusing but I think your Neuro is communicating she sees damage and would like to follow-up. Are you diagnosed and are you on a DMD?
Hello, littlelawbear! Great to see you around :)
For years I have known that I wake up every morning with two different sized pupils. I have never had color problems or diplopia, but I have had times where one eye is a little blurry and feels a bit sluggish. Before I was diagnosed, I mentioned it to a couple of doctors, but I have always passed the swinging flashlight test... I think I only have issues when I'm tired (and thank goodness, I haven't had any pain).
I am wondering if what you're experiencing is the "sometimes-it-only-happens-when-doctors-aren't-looking" phenomenon. Could it be that the evidence your previous doctor was looking for during your clinical exams just wasn't occurring during the clinical exam, but the neuro you're visiting now is looking in the right place at the right time?
- Jane
For years I have known that I wake up every morning with two different sized pupils. I have never had color problems or diplopia, but I have had times where one eye is a little blurry and feels a bit sluggish. Before I was diagnosed, I mentioned it to a couple of doctors, but I have always passed the swinging flashlight test... I think I only have issues when I'm tired (and thank goodness, I haven't had any pain).
I am wondering if what you're experiencing is the "sometimes-it-only-happens-when-doctors-aren't-looking" phenomenon. Could it be that the evidence your previous doctor was looking for during your clinical exams just wasn't occurring during the clinical exam, but the neuro you're visiting now is looking in the right place at the right time?
- Jane
RAPD or relative afferent papillary defect is usually when one pupil is better/smaller than the other and is associated with MS.
google "is relative afferent papillary defect associated with MS", it brings up several discussions
Hope this helps
google "is relative afferent papillary defect associated with MS", it brings up several discussions
Hope this helps
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Here's a page that explains it pretty well.
http://telemedicine.orbis.org/bins/volume_page.asp?cid=1-13-161-987
RAPD indicates damage to an optic nerve or severe damage to a retina. It is NOT seen when there is damage bilaterally.
RAPD can be observed at the time of damage or may not appear until later.
ON can be active without symptoms and can cause damage even if you were never aware of the disease process.
With all these possibilities, I suspect it will be impossible to determine if this is evidence of damage from your former ON or if this is a second occurrence. I'm glad your doc noticed it now. She gave you good info and sounds like a keeper to me even though it is hard to understand what seems like contradictory information. Maybe your neuro can order the MRI with special attention to the optic nerves or repeat the VER to see if that reflects damage now as well.
Thanks for sharing this interesting finding but I’m sorry to hear this evidence of damage became evident. There certainly are no shortages of surprises when living with MS.
Mary