Discussions By Condition: I cannot get a diagnosis.

Paracentral scotomas - but no diagnosis! Help!

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Anonymous
  • March 13, 2009
  • 11:25 PM

I have three paracentral scotomas - blind spots in my eye that are off to the side, not in the central line of vision - in my left eye. No one can figure out what they are, but I started out with one and with the advent of two more, I'm afraid that soon my vision is going to be completely obliterated in that eye.

I saw my regular eye doctor 5 months ago when one had appeared. It is a blind spot filled with black squiggles. Since I am diabetic, there was concern about a detached retina. Testing showed that my retinas in both eyes looked very good. They dilated my eyes and took pictures of the back of my retina which looked good. I saw two retinolgoists and neither of them could figure out what it might be. Both of my eyes looked perfectly healthy to them no matter what test was done.

I developed two more spots, so there are now a total of three. Multiple visual field tests were performed and they could finally see the three spots. However, still no idea. I was sent to the New England Eye Center at Tufts Hospital in Boston. I have seen both a retinologist and a neuro-opthamologist there. Here are the tests I have had so far:

MRI - Normal
2 ERGs - Normal
VEP - Normal
2 Angiograms - Normal
4 Macular scans - Normal
Pressure test every visit - Normal
8 visual field tests - All 8 look exactly the same and show the 3 scotomas

They have ruled out optic neuritis and feel that the problem is with the retina, but aren't sure how to proceed. During my last visit this past Monday, the doctor admitted he had no idea how to proceed. He said to call him in six months and let him know how I was doing. Unless any more spots appeared, in which case I should call him sooner. I'm concerned that when more spots do appear, we still won't know what to do with them.

I will mention that in addition to diabetes, I also have systemic lupus. None of the five eye specialists I have seen believe it is related to either of those diseases.

Has anyone had anything like this before or know someone who has? I've been doing research on my own trying to figure this out, and I'm hoping that someone else may have run across something like this. I am desperate and open to all suggestions. Thank you in advance for any suggestions!

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2 Replies:

  • I have three paracentral scotomas - blind spots in my eye that are off to the side, not in the central line of vision - in my left eye. No one can figure out what they are, but I started out with one and with the advent of two more, I'm afraid that soon my vision is going to be completely obliterated in that eye. I saw my regular eye doctor 5 months ago when one had appeared. It is a blind spot filled with black squiggles. Since I am diabetic, there was concern about a detached retina. Testing showed that my retinas in both eyes looked very good. They dilated my eyes and took pictures of the back of my retina which looked good. I saw two retinolgoists and neither of them could figure out what it might be. Both of my eyes looked perfectly healthy to them no matter what test was done. I developed two more spots, so there are now a total of three. Multiple visual field tests were performed and they could finally see the three spots. However, still no idea. I was sent to the New England Eye Center at Tufts Hospital in Boston. I have seen both a retinologist and a neuro-opthamologist there. Here are the tests I have had so far: MRI - Normal2 ERGs - NormalVEP - Normal2 Angiograms - Normal4 Macular scans - NormalPressure test every visit - Normal8 visual field tests - All 8 look exactly the same and show the 3 scotomas They have ruled out optic neuritis and feel that the problem is with the retina, but aren't sure how to proceed. During my last visit this past Monday, the doctor admitted he had no idea how to proceed. He said to call him in six months and let him know how I was doing. Unless any more spots appeared, in which case I should call him sooner. I'm concerned that when more spots do appear, we still won't know what to do with them. I will mention that in addition to diabetes, I also have systemic lupus. None of the five eye specialists I have seen believe it is related to either of those diseases. Has anyone had anything like this before or know someone who has? I've been doing research on my own trying to figure this out, and I'm hoping that someone else may have run across something like this. I am desperate and open to all suggestions. Thank you in advance for any suggestions!E mail me diesel747@hotmail.com I also have scotomas
    Anonymous 42789 Replies Flag this Response
  • Hi, Did you ever get an answer to this problem?I am curious as I have had these exact symptoms (blind spots filled with squiggles) since last Christmas. Funnily enough I also have 3 in my left eye. I have, as far as I know, no other diseases.I am currently seeing different eye doctors but nobody has been able to help so far.I would really appreciate any information you could give me.Thanks very much.
    Anonymous 42789 Replies Flag this Response
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