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MS and oct
I didn't get a response on my thread so I'm posting here. I have having symptoms of MS on and off for about 6 months. Negative MRI on 1.0T after 2 months and negative LP after 3-4 months of symptoms. Went to neuro-opth and they did an OCT test of the optic nerve which showed thinning two weeks ago. The neuro opth said could be 1 of 3 things-- 1) my nearsightedness, 2) glaucoma even though they didn't see any of that or 3) mild MS. I was stunned b/c I thought I was past the MS with the negative MRI and LP and didn't ask many questions- he wants to re-do the test in 6 months. Called back, spoke to someone who works with him and she said that the OCT test can sometiems show MS first, before other tests, ie: LP. Is this true? I had almost put MS to bed and now it's resurfcaed and I am concerned. I appreciate your input
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BUT I had an LP a few months ago and they tested for lyme in the LP and it was negative.
I am an idiot. I completely forgot a HUGE piece of medical information. 3 to 4 years ago I was ACCIDENTALLY tested by my gynologist for Lymes Disease via WB..they were supposed to test forsomething else. I had no symptoms of Lymes at the time and was annoyed the ordered the wrong test.
Annnnyway, to my surprise, I tested positive on IgM WB. It was positive for the IgM with bands 2/3 bands showing up. My IgG for Lymes was indeterminate with nonspecific bands which was "consistent with a positive IgM for lymes." I just contacted my gyno to have them release me the labs.
I didn't pursue it further because I posted on the std board about it (because the test was supposed to be for hsv and I mentioend this 'accidental' result) and was told that the WB for Lymes is up there on teh list with tests that have a lot of false positives and if I'm not having symptoms not to worry about it. So I didn't.
Is this true about the WB? I'm not sure what to do next. I never had the fever or anything back then and have felt fine up until 6 months ago. If I got Lymes, it would have had to be like 10 years ago. I also don't know how much my symptoms fit, including that OCT test result which showed "thinning" which would be more consistent with MS.
Ahhh...I can't believe I'm just remembering this now!!!
Annnnyway, to my surprise, I tested positive on IgM WB. It was positive for the IgM with bands 2/3 bands showing up. My IgG for Lymes was indeterminate with nonspecific bands which was "consistent with a positive IgM for lymes." I just contacted my gyno to have them release me the labs.
I didn't pursue it further because I posted on the std board about it (because the test was supposed to be for hsv and I mentioend this 'accidental' result) and was told that the WB for Lymes is up there on teh list with tests that have a lot of false positives and if I'm not having symptoms not to worry about it. So I didn't.
Is this true about the WB? I'm not sure what to do next. I never had the fever or anything back then and have felt fine up until 6 months ago. If I got Lymes, it would have had to be like 10 years ago. I also don't know how much my symptoms fit, including that OCT test result which showed "thinning" which would be more consistent with MS.
Ahhh...I can't believe I'm just remembering this now!!!
I'm not sure I agree with her on "when" in the season it occurs, some of us get it from just taking a shower that's too warm.....
Good luck and keep us posted, you've come to a good place to get answers and opinions!
Good luck and keep us posted, you've come to a good place to get answers and opinions!
My original MRI was done on a very low strength machine - 1.0T, so I don't really consider it very good. I will be re-doing on a better machine in 6 months. They did do contrast, but from what I've read, strength matters.
I did get tested for lots of the mimicks- Lymes, RA, Sjorgens -- I can't remember what else. My doctor did a lot.
Also, the thinning on my OCT would only fit for MS (or because I have bad vision) not any of the mimicks, so MS is my main concern.
Any thoughts on my question above about the summer/fall and when symptosm originally present-- based on my neuro saying she often sees it start in the fall, after the summer heat has passed?
I did get tested for lots of the mimicks- Lymes, RA, Sjorgens -- I can't remember what else. My doctor did a lot.
Also, the thinning on my OCT would only fit for MS (or because I have bad vision) not any of the mimicks, so MS is my main concern.
Any thoughts on my question above about the summer/fall and when symptosm originally present-- based on my neuro saying she often sees it start in the fall, after the summer heat has passed?
I guess I'd make sure it was done with and without contrast and to MS protocol. I am one of those with a negative LP, so guess I'm in the 10%.
How many of the mimic diseases has your doctor ruled out?
How many of the mimic diseases has your doctor ruled out?
Thanks so much to everyone who has been responding and helping me through this. It's nice to have a place to go and ask questions when you are going through this.
I did have a question -- or rather, point of clarification. I went to see my neuro today and, like I expected, she pretty much said there are no definitive signs of MS right now based on the test (the OCT can go either way and they don't even completely understand it) but that she wants me to do a repeat MRI in 6 months- - September. She said she wants to do it then particularly to see how I do in teh summer since heat stirs up MS.
I made a comment to her that I thought it was interesting (and possibly a good thing?) that my symptoms actually started in October, a few weeks after the heat had died down. She then said that, actually, that is when it can typically start...that they don't tend to see the beginning signs of it in teh summer, but in the fall because the heat stirs it up. Is this true? That really upset me because that is like exactly what happened to me, and tehn in the winter, my symptoms were better and have been better.
Thanks everyone.
I did have a question -- or rather, point of clarification. I went to see my neuro today and, like I expected, she pretty much said there are no definitive signs of MS right now based on the test (the OCT can go either way and they don't even completely understand it) but that she wants me to do a repeat MRI in 6 months- - September. She said she wants to do it then particularly to see how I do in teh summer since heat stirs up MS.
I made a comment to her that I thought it was interesting (and possibly a good thing?) that my symptoms actually started in October, a few weeks after the heat had died down. She then said that, actually, that is when it can typically start...that they don't tend to see the beginning signs of it in teh summer, but in the fall because the heat stirs it up. Is this true? That really upset me because that is like exactly what happened to me, and tehn in the winter, my symptoms were better and have been better.
Thanks everyone.
COMMUNITY LEADER
Did you mention this to the opthal-neuro?
Visual difficulties in the dark, are called night blindness, the medical term for night blindness is nyctalopia and its not uncommon for people with myopia to also have this issue, I also think vit A deficiency can cause this too.
The problem with difficulty focusing, is simply that there are many many things that can cause it, anything from diet to disease, even simply eye strain or even anxiety, the list is way too long to even guess.
PwMS often have visual issues most commonly its ON, often their focusing difficulties are coming from a comorbid conditons eg acquired nystagmus which causes blurred or double vision. In layman terms the muscle that controls the eye has a horizontal or vertical tremor, which basically keeps the eye moving.
I have double vision, eg H is now a # and V is now a W sort of thing, the bigger I make the text the easier it is to work out, its all the time but it didn't start off that way. I know many others with the same issue prefer capitals but for me its even harder to work out, i'm often left guessing by the shape of a word lol Sometimes I can look at someones face and they have two mouths, noses, 4 eyes etc which can be really really weird. lol
One of the problems with MS, is that if you google just about any sx, more often than not MS will come up, technically no one can tell you thinning isn't associated with MS because ON is one cause and that is a sx of MS. Dont forget though, at this stage you haven't been dx with ON, Glaucoma etc and as your opthal-neuro said it could also be related to your nearsightedness, which is probably worth looking into more.
Cheers.............JJ
Visual difficulties in the dark, are called night blindness, the medical term for night blindness is nyctalopia and its not uncommon for people with myopia to also have this issue, I also think vit A deficiency can cause this too.
The problem with difficulty focusing, is simply that there are many many things that can cause it, anything from diet to disease, even simply eye strain or even anxiety, the list is way too long to even guess.
PwMS often have visual issues most commonly its ON, often their focusing difficulties are coming from a comorbid conditons eg acquired nystagmus which causes blurred or double vision. In layman terms the muscle that controls the eye has a horizontal or vertical tremor, which basically keeps the eye moving.
I have double vision, eg H is now a # and V is now a W sort of thing, the bigger I make the text the easier it is to work out, its all the time but it didn't start off that way. I know many others with the same issue prefer capitals but for me its even harder to work out, i'm often left guessing by the shape of a word lol Sometimes I can look at someones face and they have two mouths, noses, 4 eyes etc which can be really really weird. lol
One of the problems with MS, is that if you google just about any sx, more often than not MS will come up, technically no one can tell you thinning isn't associated with MS because ON is one cause and that is a sx of MS. Dont forget though, at this stage you haven't been dx with ON, Glaucoma etc and as your opthal-neuro said it could also be related to your nearsightedness, which is probably worth looking into more.
Cheers.............JJ
I just wanted to follow up with one more question. Has anyone experienced a sensation that their eyes aren't working together? For a solid month, I was having a problem with my vision -- not double vision- but difficulty focusing my eyes. Watching TV, driving, looking at a computer-- anything-- was difficult. It has since improved but still happens from time to time. The other major eye symptom is that, in the dark, I literally cannot see out of my right eye. This is especailly the case if I look at something bright and then look away. For an extended period of time, I can't see objects. Could this be what is causing the "thinning" or atrophy or resonate at all with MS?
Haha, that's OK! I agree, that 90% isn't the best, but I'll take it over 60%! Yeah, I am going to talk to my regular neuro and GP to get their opinion on all of this, and look into other possibilities too. I may ask my neuro to let me do a repeat MRI - on a 3.0T- to see if that shows anything. If it doesn't, then I'd feel better about this whole thing, and hope the thinning is something else. Thanks to all of you for the followup. I will definitely be back to post any other results/news I have. Cheers!
Also, is optic nerve thinning considered Optic Neuritis? THe neuro-opth wrote up a report before the test and wrote that I didn't have ON.
Thanks for your reply. Yeah, I didn't know anything about the MRI strength when I went to get one, but I will be sure to get it done a 3T. My symptoms started in October and my last MRI (though I guess useless) was done in November-- so ~4 months ago. Should I ask my neuro to order one now or wait? The waiting is sort of killing me after this OCT test.
Only 60%? I read on the Healthpages on here that it's 95%. 60% is awful! People really go through that hell for 60% accuracy? I would have held off had I known that!
Is this neuro-opth accurate that my optic nerve thinning could be from my myopia (nearsightedness)? That was his theory at first and then after he did the OCT he said it could be because of that, possible glaucoma, or mild MS.
T
Only 60%? I read on the Healthpages on here that it's 95%. 60% is awful! People really go through that hell for 60% accuracy? I would have held off had I known that!
Is this neuro-opth accurate that my optic nerve thinning could be from my myopia (nearsightedness)? That was his theory at first and then after he did the OCT he said it could be because of that, possible glaucoma, or mild MS.
T
COMMUNITY LEADER
LOL I was creating my post before anyone else responded, I so didn't realise how long it took me, lol
In relation to the LP, approx 60% dx with MS have 3+ O bands, so a negative LP is also not conclusive evidence of someone not having MS, though positive LP results adds more weight to the evidence of. You can also find more on LP's in our health pages.
Cheers............JJ
In relation to the LP, approx 60% dx with MS have 3+ O bands, so a negative LP is also not conclusive evidence of someone not having MS, though positive LP results adds more weight to the evidence of. You can also find more on LP's in our health pages.
Cheers............JJ
COMMUNITY LEADER
Sorry you didn't get a response to your question before, sometimes if you post close to or over a weekend, when traffic is much slower, the occasional post gets missed.
It is true that visual testing can sometimes show MS first (ON) but as your neuro-opth pointed out, thining can also be caused by other things too so on its own its not exactly a conclusive finding for MS. Wiki list examples of other causes of optic neuritis to include infection (e.g. syphilis, Lyme disease, herpes zoster), autoimmune disorders (e.g. lupus), inflammatory bowel disease, drug induced (e.g. chloramphenicol, ethambutol) vasculitis and diabetes.
Optic Neuritis is a common sx of MS, but ON without any brain lesions, the stats are something like between 16-25% after 5 yrs to convert to a dx of MS but dont forget the opthal-neuro hasn't actually dx you with ON, so its possibly a mute point at this stage, i'd expect it needs monitoring though.
BTW a 1.0T MRI is practically useless compaired to the later 3.0T MRI's, if the 1.5T can miss lesions the 3.0T picks up, i'd expect the less strength units would be even less reliable, its probably a good idea the next time you have an MRI to go for a 3.0T or at the least 1.5T preferably done with MS protocol.
You can find more about ON and dx MS, if you look in our health pages.
Cheers.........JJ
It is true that visual testing can sometimes show MS first (ON) but as your neuro-opth pointed out, thining can also be caused by other things too so on its own its not exactly a conclusive finding for MS. Wiki list examples of other causes of optic neuritis to include infection (e.g. syphilis, Lyme disease, herpes zoster), autoimmune disorders (e.g. lupus), inflammatory bowel disease, drug induced (e.g. chloramphenicol, ethambutol) vasculitis and diabetes.
Optic Neuritis is a common sx of MS, but ON without any brain lesions, the stats are something like between 16-25% after 5 yrs to convert to a dx of MS but dont forget the opthal-neuro hasn't actually dx you with ON, so its possibly a mute point at this stage, i'd expect it needs monitoring though.
BTW a 1.0T MRI is practically useless compaired to the later 3.0T MRI's, if the 1.5T can miss lesions the 3.0T picks up, i'd expect the less strength units would be even less reliable, its probably a good idea the next time you have an MRI to go for a 3.0T or at the least 1.5T preferably done with MS protocol.
You can find more about ON and dx MS, if you look in our health pages.
Cheers.........JJ
Yeah, my RA factor was ever so slightly above "normal" but hardly, so I think that was all normal
I think my neuro is going to re-do the MRI after a few more months go by...I'll definitely make sure it's done on a 3T
Both the opthomologist and neuro-opth I saw mentioned that the thinning could be because I'm very nearsighted. I'm not sure how accurate it is, but the neuro-opth I saw is supposed to be very good.
If the OCT is reflecting MS, why wouldn't it show up (hypothetically) in the LP? I thought that was 95% accurate? I'd sure hope for accuracy after the horror that was that test!
Both the opthomologist and neuro-opth I saw mentioned that the thinning could be because I'm very nearsighted. I'm not sure how accurate it is, but the neuro-opth I saw is supposed to be very good.
If the OCT is reflecting MS, why wouldn't it show up (hypothetically) in the LP? I thought that was 95% accurate? I'd sure hope for accuracy after the horror that was that test!
A 1.0 T MRI is considered a low strength machine. It may miss lesions that a stronger machine may pick up. Was the MRI done according to MS protocol? This is as important as the the strength of the machine.
Usually joint pain is NOT considered an MS symptom. The exception could be spascity and it's tugging effect on the joint and tendons.
Have you had a rheumotology work-up yet? Many MS symptoms and rheumotolgy symptoms are familiar.
You can have a negative LP and still have MS. My LP was negative and MRI on a 1.5 and 3.0T machines showed few lesions and those were "atypical". Years later, the full picture showed it was indeed MS and my wise and seasoned neuro diagnosed it.
I would look into a rheumotology exam and see what they say.
Keep us updated.
Ren
Usually joint pain is NOT considered an MS symptom. The exception could be spascity and it's tugging effect on the joint and tendons.
Have you had a rheumotology work-up yet? Many MS symptoms and rheumotolgy symptoms are familiar.
You can have a negative LP and still have MS. My LP was negative and MRI on a 1.5 and 3.0T machines showed few lesions and those were "atypical". Years later, the full picture showed it was indeed MS and my wise and seasoned neuro diagnosed it.
I would look into a rheumotology exam and see what they say.
Keep us updated.
Ren
Is there some way for you to get to a research facility for a second opinion and (hopefully) a stronger MRI machine?
I haven't heard the OCT reflecting anything about nearsightedness. I have heard of it being a test for glaucoma.
All the information I've been given and read is that in measures the RNFL (optic nerve fiber) for atrophy. Nearsightedness has nothing to do with your optic nerve and more to do with the curve on your retina.
http://en.wikipedia.org/wiki/Myopia
"nearsightedness" is a condition of the eye where the light that comes in does not directly focus on the retina but in front of it. This causes the image that one sees when looking at a distant object to be out of focus but in focus when looking at a close object.
OCT:
http://en.wikipedia.org/wiki/Optical_coherence_tomography
I haven't heard the OCT reflecting anything about nearsightedness. I have heard of it being a test for glaucoma.
All the information I've been given and read is that in measures the RNFL (optic nerve fiber) for atrophy. Nearsightedness has nothing to do with your optic nerve and more to do with the curve on your retina.
http://en.wikipedia.org/wiki/Myopia
"nearsightedness" is a condition of the eye where the light that comes in does not directly focus on the retina but in front of it. This causes the image that one sees when looking at a distant object to be out of focus but in focus when looking at a close object.
OCT:
http://en.wikipedia.org/wiki/Optical_coherence_tomography
also, yes it was a 1.0. I was upset when I learned it because it is quite low from what I've been reading.
I haven't been having too many symptoms recently, but 6 months ago I was having muscle and joint pain and and off, tingling in arms and legs but only a couple of times, fatigue, dizziness, and some eye symptoms (difficult for eyes to coordinate and can't see out of my right eye in the dark). All last around a month. Haven't really had symptoms in months, except for fatigue and the right eye in the dark thing. I had an LP too which was negative, so I thought i was OK.
How could this OCT result be something as simple as my nearsightedness and and serious as MS? How helpful even is that? Frustrating.
How could this OCT result be something as simple as my nearsightedness and and serious as MS? How helpful even is that? Frustrating.
Yes, it is true. They are thinking the OCT will be the latest and greatest of testing for early MS detection over MRI in the future.
Like you, my OCT shows thinning. My results are still okay but they are quite a bit lower than they would expect for someone my age. I was diagnosed with MS last week.
I am questioning your 1.0T MRI... that isn't very strong. We typically see 1.5T and 3T more these days. Is there a way to verify the strength of your MRI? What are you symptoms?
Like you, my OCT shows thinning. My results are still okay but they are quite a bit lower than they would expect for someone my age. I was diagnosed with MS last week.
I am questioning your 1.0T MRI... that isn't very strong. We typically see 1.5T and 3T more these days. Is there a way to verify the strength of your MRI? What are you symptoms?
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So using the basic stats of approx 400,000 dx pwMS in the US, that means upto 40,000 dx pwMS dont have O bands, which from my perspective is still a lot of people dx without a positive LP.
As i said you haven't been dx with ON, thinning of the optic nerve can be caused by a few other things too so it's not always ON, off hand I think Glaucoma is one of the most common causes. If your opthal-neuro isn't labelling it as anything other than thinning, i would assume its only very slight and too early to distinguish. I dont know anything at all about nearsightedness, apart from my son wearing glasses because of it so I can't even begin to answer your question on that, sorry.
I think you should probably be looking at dx other than MS, a few things would be out of the norm for MS, eg bilateral sx and joint pain so with an RA just above normal i'd be excluding those possibilities.
Cheers............JJ
PS sorry again about the blooper!