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OCT Scan Results - I really need to vent... and ask for advice

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    OCT Scan Results - I really need to vent... and ask for advice

    I had an OCT scan done a year ago to determine if the blurriness/color desaturation/light contrast issues I experienced two years ago may have been optic neuritis.

    Last year, my OCT scan showed an average thickness of 92 right eye, 82 left eye with a 10 point difference. I was told that for someone my age, my RNFL should be 102. I was diagnosed with optic nerve thinning but he never did diagnose optic neuritis.

    I had VEP's done at the neuroophthalmologist with a P100 latency of 111 and 113. Borderline abnormal, perhaps? She was unsure of the diagnosis and said that if there were bigger difference in my RNFL values she would have diagnosed optic neuritis that day but her scan showed 82 left eye, 86 right eye. I wondered about subclinical damage but was told to return in one year if needed.

    I had another OCT scan today and the ophthalmologist said everything was normal. My printout of the OCT scan shows an average thickness of 104 right eye, 78 left eye with a 26 point difference. The diagnosis comment states "No evidence of retinal thinning". Um, excuse me? I went from 82 to 78 in my left eye and 92 to 104 in my right eye? It sounds to me like my left optic nerve has thinned even more and my right optic nerve may be swollen. Either that or my right eye miraculously healed itself?

    When I asked him if he thought it was optic neuritis, he said he didn't know for sure but he could tell me all of the things it's not. "Besides," he said, "That's for your neurologist to diagnose. What difference does it make anyway? There's no way to treat it."

    I am stunned, you guys. I never liked this doctor but his lack of knowledge is astounding. And his lack of being willing to diagnose it is what's holding up my diagnosis. That would give an official CIS diagnosis. I have multiple lesions in the brain but without a solid CIS diagnosis I'm left to wait until more damage occurs.

    Has anyone else had this much trouble getting diagnosed with optic neuritis? I already called my doctor to get a referral for a second opinion from another ophthalmologist. I don't want to go back to the neuroophthalmologist as the wait list is months long and it is over 50 miles away. It's a huge hassle.
    “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

    #2
    Hi IntoDust

    Originally posted by IntoDust View Post
    And his lack of being willing to diagnose it is what's holding up my diagnosis. That would give an official CIS diagnosis. I have multiple lesions in the brain but without a solid CIS diagnosis I'm left to wait until more damage occurs.
    Are you speaking about Clinically Isolated Syndrome(CIS) of Optic Neuritis or of multiple Sclerosis?

    Even if they diagnose Optic Neuritis that will not necessarily mean MS. Optic Neuritis isn't exclusive to MS. It is possible to have Optic Neuritis and not have Multiple Sclerosis. I have MS but have never had Optic Neuritis and my sister had Optic Neuritis but does not have Multiple Sclerosis.

    I already called my doctor to get a referral for a second opinion from another ophthalmologist. I don't want to go back to the neuroophthalmologist as the wait list is months long and it is over 50 miles away.
    Best wishes on your next appointment. Hopefully answers and/or clarifications will be forth coming.
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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      #3
      Originally posted by SNOOPY View Post
      Are you speaking about Clinically Isolated Syndrome(CIS) of Optic Neuritis or of multiple Sclerosis?
      I’m referring to a CIS of optic neuritis. I’ve been going through the diagnostic phase for a year and a half. Plenty of brain lesions, but since they’re subcortical and not in the areas required by the McDonald criteria, I’m in limbo.
      I’ve had so, so many tests done to rule out other conditions. You name it, I’ve been tested.

      I’ve had lots of symptoms over the years but nothing quite gets your attention like losing your vision in one eye.
      My first appointment with the ophthalmologist he told me it wasn’t MS, because he would be able to see it on exam. If 2/3 of ON cases are retrobulbar with a normal exam, then I’m not sure how he could guarantee that. He’s said some really stupid stuff and I should have gone to another ophthalmologist a long time ago. I just assumed the blurry vision would most likely be a ‘one and done’ episode and I’d just get my yearly OCT scans that would track the atrophy he originally told me I had. How wrong I was ...
      “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

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