Aa
OCT and MS
When I was at my last trial follow up, I had an OCT test done on their new machine. Since they're just trying the machine out, I don't get an interpretation, but I did get some pretty color printouts. I am curious about the results, but have been really busy recently and it looks like things will continue this way for a while so I thought I'd throw this out to the forum in case anyone happens to have any answers for my questions.
OCT stands for optical coherence tomography and is a test that uses a laser to look at the eye. For MS, they measure the thickness of the retinal nerve fiber layer (RNFL), which may correlate with general brain atrophy and progression in MS. OCT has potential to be used to track progression of MS and to be used in the dx process.
I have put of some pictures of the results I got at http://www.medhelp.org/photo_collections/list/7139. Medhelp cut them off some so you have to click on the images to get the full picture.
The basic conclusion of the report is clear. There are two red-colored boxes labeled "classification" that baldly state "outside normal limits."
The results are in the form of a hilly graph that has red (outside normal limits), yellow (borderline) and green (within normal limits) swathes that shows ranges of thickness of the RNFL in micrometers going around the 360 degrees of a circle. There is a black line which I think shows my results and a green line in the middle of the green area which presumably is some sort of average.
There are also circles divided into quarters or eighths with a central circle with section that include numbers and are colored green, yellow or red. These are labeled with letters (S, T, N, I or TS, NS, T, N, TI, NI, and G). Whatever I, NI, and G are, they're red in my results.
Does anybody know what these letters stand for? Also, do these different parts of the retinal nerve fiber layer correspond to anything in the brain? Say since my I is bad, does that mean some specific part of my brain is atrophied. Or is that just the order in which the atrophy tends to happen? Or it's just random?
Also, is anyone up on the use of OCT in MS dx? I am having a "wonder if I really have MS" phase recently. Is RNFL thinning something that happens only in MS or does it happen in everything that cause brain atrophy. Does anybody know which of the MS mimics would be likely to have a positive OCT?
If anyone has any other thoughts on this, I'd be interested.
FWIW, I have never had a visual evoked potential and have no known optic neuritis.
sho
OCT stands for optical coherence tomography and is a test that uses a laser to look at the eye. For MS, they measure the thickness of the retinal nerve fiber layer (RNFL), which may correlate with general brain atrophy and progression in MS. OCT has potential to be used to track progression of MS and to be used in the dx process.
I have put of some pictures of the results I got at http://www.medhelp.org/photo_collections/list/7139. Medhelp cut them off some so you have to click on the images to get the full picture.
The basic conclusion of the report is clear. There are two red-colored boxes labeled "classification" that baldly state "outside normal limits."
The results are in the form of a hilly graph that has red (outside normal limits), yellow (borderline) and green (within normal limits) swathes that shows ranges of thickness of the RNFL in micrometers going around the 360 degrees of a circle. There is a black line which I think shows my results and a green line in the middle of the green area which presumably is some sort of average.
There are also circles divided into quarters or eighths with a central circle with section that include numbers and are colored green, yellow or red. These are labeled with letters (S, T, N, I or TS, NS, T, N, TI, NI, and G). Whatever I, NI, and G are, they're red in my results.
Does anybody know what these letters stand for? Also, do these different parts of the retinal nerve fiber layer correspond to anything in the brain? Say since my I is bad, does that mean some specific part of my brain is atrophied. Or is that just the order in which the atrophy tends to happen? Or it's just random?
Also, is anyone up on the use of OCT in MS dx? I am having a "wonder if I really have MS" phase recently. Is RNFL thinning something that happens only in MS or does it happen in everything that cause brain atrophy. Does anybody know which of the MS mimics would be likely to have a positive OCT?
If anyone has any other thoughts on this, I'd be interested.
FWIW, I have never had a visual evoked potential and have no known optic neuritis.
sho
Guitar_grrrl: It will be interesting to see the results you get. Do you have eye problems?
I did find out that the letters for the quandrants mean superior, nasal, inferior, and temporal, although I have no idea of the significance of that or what the G in the center stands for.
Quix: Of course, I hang on your every word! Who doesn't? However, my atrophied brain doesn't seem to be able to hang on to them for long. And yes, your reply is still intelligible.
So it seems like the OCT is more useful for tracking progression than for dx, especially early on, which makes sense. I don't think I have glaucoma, but it seems like some other MS mimics, especially demyelinating diseases, might also cause both RNFL thinning and brain atrophy??
I do have objective abnormalities (abnormal SSEP, c-spine lesions big enough to show up on a 1.5 T open MRI, 13 o-bands), but not much going on in the brain (spots, but apparently not large ones) and little in the way of obvious relapses plus the tendency for my symptoms to be fairly bilateral. So although I had what seemed to be a pretty thorough work-up for mimics since I don't seem to be typical, I sometimes still wonder if maybe it isn't something else going on.
Jess: You're not hijacking. I hope you can get a repeat test soon, but I have no idea how long it makes sense to wait. The test, of course, is super short and easy, but I suppose it might have to be expensive to pay for the machine.
Jen: I'm sorry to hear that your husband has something wonky going on with his eyes. I have had OCT done in both neuro and ophthalmologist offices, but I don't know how you would find out which ones have the equipment or get a referral.
sho
I did find out that the letters for the quandrants mean superior, nasal, inferior, and temporal, although I have no idea of the significance of that or what the G in the center stands for.
Quix: Of course, I hang on your every word! Who doesn't? However, my atrophied brain doesn't seem to be able to hang on to them for long. And yes, your reply is still intelligible.
So it seems like the OCT is more useful for tracking progression than for dx, especially early on, which makes sense. I don't think I have glaucoma, but it seems like some other MS mimics, especially demyelinating diseases, might also cause both RNFL thinning and brain atrophy??
I do have objective abnormalities (abnormal SSEP, c-spine lesions big enough to show up on a 1.5 T open MRI, 13 o-bands), but not much going on in the brain (spots, but apparently not large ones) and little in the way of obvious relapses plus the tendency for my symptoms to be fairly bilateral. So although I had what seemed to be a pretty thorough work-up for mimics since I don't seem to be typical, I sometimes still wonder if maybe it isn't something else going on.
Jess: You're not hijacking. I hope you can get a repeat test soon, but I have no idea how long it makes sense to wait. The test, of course, is super short and easy, but I suppose it might have to be expensive to pay for the machine.
Jen: I'm sorry to hear that your husband has something wonky going on with his eyes. I have had OCT done in both neuro and ophthalmologist offices, but I don't know how you would find out which ones have the equipment or get a referral.
sho
Oh, and I remember the other question - I'd love to have an OCT test done, but I don't know what kind of clinic would do the procedure. And I'm not sure if it's necessary.
I've just found out that my husband has had some kind of optic nerve damage - he has the color thing, where his vision is redder in one eye. I guess that's ON, right? Should I be worried?
Quix- darn, I was afraid you would say that! LOL Here I was thinking "well, at least some part of me is thinning!" considering how I'm still trying to lose the baby weight :-)
Do you have an opinion on how often the tests should be done? Like I said, I'm not having a lot of eye issues, but I do feel they are worse than they were earlier this year. I ask because I have a friend who has MS and her first attack was ON, which was so bad she lost her sight for a few weeks. This comes back with every bad flare she has. And, honestly, it is one of my biggest fears and one reason I've pushed so hard to find a diagnosis so I can start DMD's.
Shoshin, I'm sorry to threadjack your thread!
~Jess
Do you have an opinion on how often the tests should be done? Like I said, I'm not having a lot of eye issues, but I do feel they are worse than they were earlier this year. I ask because I have a friend who has MS and her first attack was ON, which was so bad she lost her sight for a few weeks. This comes back with every bad flare she has. And, honestly, it is one of my biggest fears and one reason I've pushed so hard to find a diagnosis so I can start DMD's.
Shoshin, I'm sorry to threadjack your thread!
~Jess
I had OCT and a visual evoked potential on my first appointment with my neuro (he is actually a neuro-ophthalmologist), this was back in mid-February. The only issue I had with my eyes was a brief period of photophobia (my eyes would get sore if I was on a website with a white background, mostly) It wasn't really too bad and only lasted about 2 weeks.
The OCT showed some "thinning" (is that the same as atrophy?) of the optic nerve on my left eye, but still within normal limits. The VEP was normal on my right eye, but showed an 8 millisecond delay with my left eye. Not abnormal enough to mean much more then a reason to investigate further (my neuro considers anything more than a 5 millisecond delay abnormal enough to investigate further) And those are pretty much the only tests that have shown any bit of abnormality. I've had some abnormal reflexes, but not every time.
I'm not sure how often my doctor usually does those two tests, but I know I'm going to ask to have it redone early next year. I still have not had major issues with my eyes, but I feel they are worse than they were earlier this year.
I'm sorry I can't help you with any of the letters :-(
~Jess
The OCT showed some "thinning" (is that the same as atrophy?) of the optic nerve on my left eye, but still within normal limits. The VEP was normal on my right eye, but showed an 8 millisecond delay with my left eye. Not abnormal enough to mean much more then a reason to investigate further (my neuro considers anything more than a 5 millisecond delay abnormal enough to investigate further) And those are pretty much the only tests that have shown any bit of abnormality. I've had some abnormal reflexes, but not every time.
I'm not sure how often my doctor usually does those two tests, but I know I'm going to ask to have it redone early next year. I still have not had major issues with my eyes, but I feel they are worse than they were earlier this year.
I'm sorry I can't help you with any of the letters :-(
~Jess
Sho, I have written repeatedly about the use of OCT in MS. Naughty girl, don't you just hang on my EVERY word???
OCT is a method of determining the thickness of the outermost edge of the optic disc as it fans out 360 degrees to cover the retina with nerve fibers from the optic disc. When they studied it in MS they were able to correlate the results of the OCT with the MRI results showing brain and spinal cord atrophy. So, it was standardized to be used with MS fairly far along in it's progress. They can use this tool to see the overall CNS tissue loss from the disease. It is far easier and cheaper than the MRI.
When I had mine done, it showed definite mild atrophy of the optic disc on the left and borderline low on the right. The OCT will show the atrophy before the paleness can be seen by physical exam. I had no memory of having eye symptoms, but when I looked back on my timeline that I gave to the MS neuro that diagnosed me, I did complain of a couple day period in 2004 over Christmas in which I had eye pain and photophobia. I don't remember which eye it was. I just thought I had some odd infection, I think. Maybe that was my experience with ON.
The really interesting thing here is that an abnormal OCT means there has been optic neuritis - whether or not there have been symptoms or signs of optic neuritis. In other words, that 80% of people with an abnormal OCT have had ON whether or not they or their doctors have known about it.
Since this is proof that ON can occur subclinically - tha is, ON can occur without any signs or symptoms - a lot of the "rules" about how ON occurs, what it feels like, how long it lasts, and whether someone has had it just have flown out the window. OCT has not been widely available to the MS docs, but is appearing more commonly.
OCT has not been standardized to be used in the diagnosis of MS. It possibly won't be. I don't believe that brain atrophy is necessarily present at the beginning of our disease. However, for anyone with years of symptoms and increasing disability I do think it could be a valuable part of the diagnosis.
Sho, I also have been caught in the "what if what I have is not MS?" worries. Part of what gets me over this is remembering that my OCT shows the atrophy. So many of my tests have shown no progression or normality. It's infuriating, because I obviously am gaining disability.
Welcome to my world.
Quix
OCT has been used for at least 30 years in more crude fashion to document and follow the progress of other eye diseases, especially glaucoma. Glaucoma has the same effect of causing withering - or atrophy - of the optic disc and, thus, thinning of the disc. That is why they always check the intraocular pressures at the time they do the OCT testing.
Anything that causes atrophy of the optic nerve would cause changes in the OCT, but not all things that cause brain or spine atrophy will also cause shrinking of the optic nerve. So, the main other thing to look at is glaucoma.
I have been continually surprised that more neuro-ophthalmologists have not begaun using OCT. But, then, again, so many of our neuro ophtho's have not been aware that 2/3s of people with MS do not show optic disc pallor on physical exam.
Again, I wonder why we know so much more about what is written about MS than some of our specialists.
Quix
OCT is a method of determining the thickness of the outermost edge of the optic disc as it fans out 360 degrees to cover the retina with nerve fibers from the optic disc. When they studied it in MS they were able to correlate the results of the OCT with the MRI results showing brain and spinal cord atrophy. So, it was standardized to be used with MS fairly far along in it's progress. They can use this tool to see the overall CNS tissue loss from the disease. It is far easier and cheaper than the MRI.
When I had mine done, it showed definite mild atrophy of the optic disc on the left and borderline low on the right. The OCT will show the atrophy before the paleness can be seen by physical exam. I had no memory of having eye symptoms, but when I looked back on my timeline that I gave to the MS neuro that diagnosed me, I did complain of a couple day period in 2004 over Christmas in which I had eye pain and photophobia. I don't remember which eye it was. I just thought I had some odd infection, I think. Maybe that was my experience with ON.
The really interesting thing here is that an abnormal OCT means there has been optic neuritis - whether or not there have been symptoms or signs of optic neuritis. In other words, that 80% of people with an abnormal OCT have had ON whether or not they or their doctors have known about it.
Since this is proof that ON can occur subclinically - tha is, ON can occur without any signs or symptoms - a lot of the "rules" about how ON occurs, what it feels like, how long it lasts, and whether someone has had it just have flown out the window. OCT has not been widely available to the MS docs, but is appearing more commonly.
OCT has not been standardized to be used in the diagnosis of MS. It possibly won't be. I don't believe that brain atrophy is necessarily present at the beginning of our disease. However, for anyone with years of symptoms and increasing disability I do think it could be a valuable part of the diagnosis.
Sho, I also have been caught in the "what if what I have is not MS?" worries. Part of what gets me over this is remembering that my OCT shows the atrophy. So many of my tests have shown no progression or normality. It's infuriating, because I obviously am gaining disability.
Welcome to my world.
Quix
OCT has been used for at least 30 years in more crude fashion to document and follow the progress of other eye diseases, especially glaucoma. Glaucoma has the same effect of causing withering - or atrophy - of the optic disc and, thus, thinning of the disc. That is why they always check the intraocular pressures at the time they do the OCT testing.
Anything that causes atrophy of the optic nerve would cause changes in the OCT, but not all things that cause brain or spine atrophy will also cause shrinking of the optic nerve. So, the main other thing to look at is glaucoma.
I have been continually surprised that more neuro-ophthalmologists have not begaun using OCT. But, then, again, so many of our neuro ophtho's have not been aware that 2/3s of people with MS do not show optic disc pallor on physical exam.
Again, I wonder why we know so much more about what is written about MS than some of our specialists.
Quix
The neuro I saw at UCSF wants to do the same test on me. even though I have no visual issues. She says that the results are abnormal in some 80% of MS patients.
I don't know of any mimics that would have a positive OCT. I have no idea what the letters you describe mean, either. Sorry...
I don't know of any mimics that would have a positive OCT. I have no idea what the letters you describe mean, either. Sorry...
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