popstarrdiva
02-27-2009, 01:37 AM
Hi all,
So think I have a case of ON again. Last time was in'93 as a child so I don't remember how it started. I just noticed one eye was blurry and being the same eye I had ON and having had a VEP come back abnormal last month guessed it. I went to the Doc who sent me to ER who said most likely and seeing an opthamologist tomorrow.
So now I have gotten RSD/CRPS which is being linked to people with MS, Constant vertigo for 7 weeks with residual problems and no cause, sudden ON for the 2nd time with no cause and all in the same year!!! And they want to call me normal....
Dr's are so frustrating....abnormal vep, but nothing on the MRI...well, I've heard plenty of times you don't need an MRI with crazy neurological proof!!!
So wondering how your experience with the onset of ON has been?
Thanks for reading
So think I have a case of ON again. Last time was in'93 as a child so I don't remember how it started. I just noticed one eye was blurry and being the same eye I had ON and having had a VEP come back abnormal last month guessed it. I went to the Doc who sent me to ER who said most likely and seeing an opthamologist tomorrow.
So now I have gotten RSD/CRPS which is being linked to people with MS, Constant vertigo for 7 weeks with residual problems and no cause, sudden ON for the 2nd time with no cause and all in the same year!!! And they want to call me normal....
Dr's are so frustrating....abnormal vep, but nothing on the MRI...well, I've heard plenty of times you don't need an MRI with crazy neurological proof!!!
So wondering how your experience with the onset of ON has been?
Thanks for reading
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MSJayhawk
02-27-2009, 09:57 AM
My eye problems did not show up until 2002. When they did, they stayed. I went through several bouts of total blindness too. Nowadays the only lingering problem is light sensitivity and pain in the right eye. My VEP was also abnormal for the right eye.
MRI's are good tools, but there are a couple of hundred years worth of diagnosis prior to the MRI. Like every good testing system, the people testing have to be methodical, knowledgeable, and experienced. There are criteria in place in order to better exclude other possibilities prior to a diagnosis for MS.
MRI's are good tools, but there are a couple of hundred years worth of diagnosis prior to the MRI. Like every good testing system, the people testing have to be methodical, knowledgeable, and experienced. There are criteria in place in order to better exclude other possibilities prior to a diagnosis for MS.
Bearygood
02-27-2009, 11:15 AM
My case was textbook. Started with pain behind my eye, worse upon movement. By the time I got to the eye doctor I was JUST starting to become blurry and it wasn't until I had the visit that I realized I had color and field of vision loss.
I wound up not doing steroids because by the time I got to the GOOD neuro-ophthalmologist (went to a bad one first) it seemed like I had already hit the peak and was starting to rewind and also (very importantly), the color of my optic nerve indicated that it was still healthy. I feel very lucky and truthfully, if it ever happens again, I will definitely consider steroid treatment. To find out more about Optic Neuritis, how it should be treated and also its relationship to MS, I suggest you looking up the Optic Neuritis Treatment Trials (ONTT). It's very informative.
I had a few other sx at the time of my ON but nothing that would have led me to the doctor and certainly, nothing that would ever make me suspect I had MS! For many people, ON is a quick route to a dx and I fall right into that group.
I wound up not doing steroids because by the time I got to the GOOD neuro-ophthalmologist (went to a bad one first) it seemed like I had already hit the peak and was starting to rewind and also (very importantly), the color of my optic nerve indicated that it was still healthy. I feel very lucky and truthfully, if it ever happens again, I will definitely consider steroid treatment. To find out more about Optic Neuritis, how it should be treated and also its relationship to MS, I suggest you looking up the Optic Neuritis Treatment Trials (ONTT). It's very informative.
I had a few other sx at the time of my ON but nothing that would have led me to the doctor and certainly, nothing that would ever make me suspect I had MS! For many people, ON is a quick route to a dx and I fall right into that group.
popstarrdiva
02-27-2009, 11:51 AM
Thank-you for all of your responses. I am just sooo frustrated and I love that I can vent here without judgement. So thank-you. I just saw the opthamologist and he said that he is not concerned about 1 day of blurry vision. My vision is better than yesterday. He wants to do a visual fields test and see if anything develops in the meantime. He is not sure that it is ON. He said that if I hadn't had it before then he could say yes because there is colour difference and light brightness difference. He said that I have a lot of things going on and wants to leave it to the MS neurologist to track my progress on the VEP's.
So there we have it. Worst thing is I am going on vacation tomorrow and so he told me to come back if my vision gets worse.
Thanks for listening
So there we have it. Worst thing is I am going on vacation tomorrow and so he told me to come back if my vision gets worse.
Thanks for listening
Bearygood
02-27-2009, 12:24 PM
Here's the potential good news...IF the optic nerve is in good shape, recovery from ON is often the same as it would have been if you had gotten steroids; it will just take longer. Did the doctor say anything about the color of the nerve?
Not all ophthalmologists are capable of dxing ON. I know things are done differently down here, but even though my ophthalmologist knew I had ON, she referred me to see a neuro-ophthalmologist immediately. ON is very closely associated with MS but it CAN be caused by other things. My ON was officially dxed on the basis of examination alone (no VEP) from the first NO I saw but when I got to the new and improved NO (first doctor was not great) she had me get an MRI of the optics.
Good luck, popstarrdiva!
Not all ophthalmologists are capable of dxing ON. I know things are done differently down here, but even though my ophthalmologist knew I had ON, she referred me to see a neuro-ophthalmologist immediately. ON is very closely associated with MS but it CAN be caused by other things. My ON was officially dxed on the basis of examination alone (no VEP) from the first NO I saw but when I got to the new and improved NO (first doctor was not great) she had me get an MRI of the optics.
Good luck, popstarrdiva!
popstarrdiva
03-09-2009, 11:19 PM
Ok. So, saw the Neurologist today and he says my vision was 20/20 today and that the visual fields test was great. He wanted to either do nothing or send me to a Neuro-Opthamologist. I told him about the colour vision and he said that he wanted to send me to the N Optha...just in case, but he said that he was not worried about me. AND the appointment may be in 4 months!!!
My left eye feels like vision is missing and the right started to blur last Saturday.I saw my old Optomotrist and she said that she could write a letter and so could my primary care Doc to try to get me in faster. She says she thinks it sounds like ON and wants me to get help.
Thanks for all the help...
My left eye feels like vision is missing and the right started to blur last Saturday.I saw my old Optomotrist and she said that she could write a letter and so could my primary care Doc to try to get me in faster. She says she thinks it sounds like ON and wants me to get help.
Thanks for all the help...