Nancy,
Thanks for sharing. It's good to know that I'm not the only one that just couldn't do it! Also I thought having my eye held open was strange but I guess it is not uncommon after all.
I have never had or heard of a VNG. I wonder if that test will be in my near future. I am seeing a neuro-opthomologist (sp?) in May. I have never seen one but am told if you have had ON it is very important. Maybe he/she will have lots of answers for me and actually explain in terms that I can understand, lol.
Thanks again - Take care
Erin :)
Hi Erin--I can't answer your questions, but I remember that my optometrist used to keep telling me to open my eyes wider and was surprised when I couldn't--I absolutely couldn't. She even had to hold my eyes farther open (for some part of the exam).
And when I'd get a VNG (vestibular testing with goggles on your eyes), apparently I didn't do so well at keeping my eyes open either--I FELT like I was, I was really trying as hard as I could, but the audiologist kept saying over and over "Keep those eyes WIDE open!"
Nancy
Bump
There is so much activity this was ready for page 3 and I am hoping for input
Thanks
Erin :)
Quix - Thanks for the laugh - I needed that!!!!
All :
I just received a copy of my recent VEP comment please
Interpretation: This is an abnormal visual evoked potential. We could not identify the P100 on the left. There was a lot of technical difficulty as apparently the patient could not hold her eye open which is an unusual finding in optic neuritis from a clinical standpoint. The examiner needed to hold her left eye open. This may have induced a strong technical component. In acute optic neuritis, usually the P100 is present but markedly prolonged. Clinincal correlation is warranted.
Latency of P100 - 101 Right eye Not identified Left Eye
Ok so I have MAJOR cognitive issues so these reports are like gimmerish to me except positive vs. negative but what the heck?!
First I didn't like the word appararently. The examiner is the one who decided my eye wasn't open enough and she would just hold it with her finger. Are they saying that I was faking? How do you fake a twitching/lazy eye?
Or are they saying that my left eye basically wasn't working at all?
I will ask the neuro in May but for those of you that have had these maybe some opinions in the mean time.
Thanks,
Erin :)
Oh my god, I am sooo glad I am not the only one who has this problem with their eyes. I tried to tell the neuro-optho about the trailers and she gave me a funny look. I think she thought I was taking acid, lol. I have woken up with one eye gone gray more than once. It lifts after a minute, but in the back of my mind is always, will this be the day I go blind? It's funny it quit when winter came but now it's back with a vengeance with spring on the way. God I dread summer, shudder.
To PastorDan - and no apology from you necessary either the time lag often causes a pronlem and my wonderful family here sure made a new girl feel special yesterday.
To Jane - yes I have had this too, the mornings are the worst for vision stuff for me the momentary blindness has happened a few times but I wake up every morning with only partial sight in one eye. There are patches of grey in my sight and everything seems to shimmer. The ghosting I see on objects is apparently incomplete double vision and as of things move towards me quickly they split into 2 images. I have been told this is now due to weak eye muscles also causing a type of convergence disorder. Driving is out of the question on a ad vision day.
I still get flashing lights (can't remember the medical term) for a few seconds in a dark room and when I move my head quickly. This surprises me as the website Quix gave above explains how this clears up eventually after an of ON Does that mean that mine is still active?
In spite of all this my VEP was described as 'borderline' whatever that means.
Pat
Just as one example---I went totally blind in 1973 (for about 6 wks or more as I recall.) My vision was totally retuned over time with Deltasone. For many years they have said I had a pale optic nerve when they examined me--BUT they no longer say that~ They say it looks very healthy now.
Another curiosity---Twice in the past 10-15 years I have awakened and gone blind momentarily in one eye when I opened my eye initially for maybe one to two seconds. (The room had some light.)I had a carotid artery scan which was quite clear. No reason was ever detected. Anyone else have this? I've had MS over 36 years---weird stuff keeps happening! Jane
Quote from Quix, above: "See? I said that without dissing the stupid doctors."
Reply: ROFLM*O! <~~ Rolling on floor laughing my asterisk off!
Pat: No reason you should be sorry for not answering my question. After all, I'm the one who saw a notice that yesterday was your birthday and neglected to wish you a happy one. Just to compensate for that, I will pray that the rest of yours are happy!
This would be a god question for the extert. The answer is probably yes, if the episode caused very little damage and those tests were normal at the time of the attack, but really the answer from me is:
I don't know. :((
Quix
Here's the flip side of the question: Can someone have had ON long ago, but now have normal-looking optic disc and retina, and have normal VEP and OCT tests? I've had my little scotoma for about 10 years, but everything looks fine to the pros. I wrote the long-ago doctor to see if they could send me records, and the answer is yes--but I don't have them yet.
The stats are that from 64% to over 70% of all people with ON will have a NORMAL- appearing optic disc on exam. Any doc that tells you that a normal physical eye exam means you don't have optic neuritis, doesn't know much about the disorder. See? I said that without dissing the stupid doctors.
Quix
To Pastor Dan - So sorry I hadn't noticed the questions been very busy today.
To Quix - Thanks so much for clearing this up. My first ON was 20 years ago and was very dramatic - total blindness in 1 eye and it never really healed completely. I have since had it again in the same eye although I have also had a slight occurrence in the other eye. Only the eye with the original ON has a pale lens not the other eye.
I have had ophthalmologists, opticians and the neuro comment on the pale lens, so Quix info has been very enlightening. My colour vision is only slightly affected but the double, blurred vision and strange eye stuff carries on.
The web site is excellent - useful discussion guys.
Pat
I have the attention span of a gnat --- OH! Look a Squirrel!
I finally understood one of the first questions. After ON heals if the optic disc was pale before, generally it will stay pale. As for MRI lesions, those often clear up which again, tells us that the MRI doesn't show everything!
Here is a site that has a lot of stats and great pictures about ON and its lingering effects. From Denmark I think.
http://www.jandoerffel.de/on.htm
I am not aware of any mechanism by which ON causes cataracts, but I am weak in ophthalmologiy.
Steroids, on the other hand, have a potent ability to cause cataracts. That I know for sure.
Q
Yes, steroids can cause cataracts. In kids with Lupus and other diseases that get large amounts of steroids we can see cataracts after just a year or so. It is a cummulative dose-related thing. The more steroids you get through your life the more likely you are to get cataracts.
Quix
I just hope they didn't schedule that instead of the neuro-psychologist they told me I'd be seeing. I don't mind seeing both. Shucks, throw in a couple more, as far as I'm concerned. Just get 'em done and figure this thing out.
BTW, I've never known a soul to have problems with cataract surgery. One guy I worked with years ago had a bad Lasik surgery, but I think that's different. Most who go through cataract removal are soon thankful, in my experience.
ess,
Hi! I'm hanging in there like you said. Thanks for the "good" news about cataract surgery. One less thing to be freaked out about. Now I won't worry about maybe having to have surgery in the future since you say it's not so bad and how great that it is a one time deal.
I will keep you posted on the neuro-ophth appt and what they have to say.
Pastor Dan is going in May also so we can compare notes :)
Hugs,
Erin :)
Thanks for clearing up the definitions of lens & optic disk. I had looked at diagrams of the optic disk and thought that must be the lens that people speak of. But it is different. I didn't have as much success a googling optic lens. I just got glasses when I tried it..
Oh, and I forget where I mentioned it, but I learned today that I'm to see a neuro-ophthalmologist mid-May. Yes, I told them to call if they have a cancellation. They put me on the list, but warned it's a long list already.
Ophthalmologist I saw last December -- after the faintly hazy patch appeared to the upper right, but before I began to experience eye pain -- said I had the very faintest hint of cataract in each eye, but that it was very faint, and might never be a problem.
jdhecaj, these words hit me square in the face: "Many patients with optic neuritis may lose some of their color vision in the affected eye, with colors appearing subtly washed out compared to the other eye." I've used very similar terms in describing the odd patch in my field of view, but I think this is the first time that I've seen a reference talking about the color vision issue.
I'll be interested in comments on this. I've never heard of cataracts being caused by either ON or steroids, so if someone has good info, please let 'er rip.
You are very young for a cataract, but at the same time, cataracts are not entirely an old people's disease. Babies have been born with them, and they can occur at any age thereafter.
The good news is that cataract surgery (if needed---not all are that bad) has become incredibly easy on the patient. Almost no discomfort or down time. Very few complications. And the best news of all is that once the surgery is done, the cataract can't recur. So from that standpoint you are set for life.
If you need steroids, I say get them. And please let us know what the neuro-ophth says about this.
Hang in there.
ess
Quix,
Thanks for the scoop on ON. I think I get it.
One more question if you or anyone else knows. As you know I have had 2 episodes of ON already this year requiring 5 days each of IV Steroids. I now have the beginning of a cataract in my left eye.
One doctor says it's from the ON and the other says it's form steroids.
I see a neuro-opthamologist next month but am curios which is it and should I say no to the steroids because they are giving me a cataract?
Thanks,
Erin :)
A couple corrections are needed.
The area of the eye that shows optic neuritis is the optic "disc". This is the place on the retina (the back of the eye) where the optic nerve comes out. The lens is the clear, focusing part of the anterior eye behind the pupil. The iris is the anterior colored area that we see as blue eyes or brown eyes.
Retrobulbar neuritis is actually Retrobulbar Optic Neuritis. The words Optic Neuritis refer to any inflammation on the optic nerve from where it leaves the eye all the way back to the brain. Retrobulbar refers to that part of the optic nerve that is farther back behind the eyeball. All the literature states that after optic neuritis heals (no matter if it is retrobulbar or not) it should leave a person with an abnormal VEP forever. However, there is a lot of variability in how the VEP is performed and interpreted. So, some people with a history of ON will have a "normal" VEP in the future.
Whether the disc is pale from loss of fibers is relative. If the damage is very slight, the examiner may not be able to percieve the faint paleness. There has to be quite a bit of damage before it is visible - hence the hope that OCT will be useful.
In general, anywhere in the central nervous system, when an area of demyelination heals, the healing is NOT PERFECT, so the function of that nerve will always be a little slow. That is why you don't have to be having symptoms for an Evoked Potential to be abnormally slowed.
Does this help clear up some of the questions?
If you google
optic disc
you will see a site that show pictures of the retina and shows the disc.
Quix
My neurologist said that generally the optic nerve will have an abnormal appearance, a paleness, that persists for quite some time after an episode of ON.