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712568 tn?1268104907

drastic eye sight decrease... IM DESPERATE!

I am a 29 year old female, and have had some huge changes ... -- severe vision loss, loss of depth perception, and periphial vision. I can only see about 10% from my central vision. I have vertigo, severe headaches at times, where I lose my vision in my left eye. .. (different from the regular migranes I have suffered) and severe back pain. But I saw the neurologist, and he saw multiple "white spots" in my MRI, said it had to do with the Migranes I suffered. But then he said, well, you seem to be pretty young for those to be showing up just yet. So he is sending me for another MRI with the dye. I am not satisfied with the "white spots" being due to migraines. With all the other symptoms... He doesnt think it is MS. I am so completely frustrated -- I have been dealing with this for a while now, and just want to get on with my life. Either deal with the fact that I am going blind, or find something to make it better.
I also saw an opthomologist, and she said there was nothing structurely wrong with my eyes. .. the neurologist thinks its an eye problem. They are going back and forth.
They thought it was optic neuritis.... but my eyes look healthy. I have had two field tests, where the periphial vision has been more constricted the second test. Now "new symptom" things are getting darker. I don't see things as bright as they normally are. I also had a color test done, and that was horrible too.
This is really scary... I am falling alot, I don't know if its just that I cant see??? or Neuro.? But its like my feet just quit working...I got new glasses in October and now I see 20/60 with them, and have been told I can't drive.
Any ideas???
I'm not looking for a diagnosis, I just want to know what else I could be looking for?
6 Responses
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284078 tn?1282616698
MEDICAL PROFESSIONAL
Thanks for the nice suggestions.  An ERG could possibly be helpful after more obvious tests were all done.  The ERG is not as easy as you think.  At some point it might be needed but you would usually see at least some sort of abnormal findings in the retina, particularly in an adult that had previously normal vision.  My best advise is to see a neuro-opthalmologist.  They are best trained for these mystery cases of decreased vision of unknown origen.  The interesting thing about your comments is that you say BOTH eyes are having major problems.  I find that rather curious because most eye diseases will affect the eyes in at least a slightly asymmetric way.  Thinking of bilateral severe vision loss makes me think of possible a toxic or metabolic cause or else a cenral nervous system problem like a stroke or mass effect (which would have been seen on MRI.)  MS would generally be rather asymmetric.

MJK MD
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Avatar universal
Perhaps you should start to consider some of the inherited retina disorders. Regular eye MDs may not be all that familiar with them and in the early stages, many may not be obvious to spot. You should also consider to a large well known eye center. 20/60 vision with no diagnosis is not acceptable. You should know what is going on.  The "dull" colour symptom is classic optic neuritis but it is likely that you would have other symptoms associated with this that would be more suggestive of ON. You would need to have a full eye work-up if you have not already, including FA, OCT, photography etc.  
Helpful - 0
Avatar universal
I would add - make certain that you obtain a multifocal ERG - unversity teaching hospitals are best for complicated or hard to diagnose cases
Helpful - 0
712568 tn?1268104907
I have had the test that tests your optic nerve for movement.. not sure what it is called. I have had the color hue test, a field test, and a few others... I just dont know what to do anymore. Its affecting my husbands job now too... Him having to take me to these appointments, because I cant drive... I am at my wits end
Helpful - 0
517208 tn?1211640866
MEDICAL PROFESSIONAL
Dear singinalong,

I would definitely recommend that you seek the care of an eyeMD specializing in neuro-ophthalmology.  He/she will be able to assist you in determining the cause of your symptoms and the reduced vision.  If possible, obtain the scans and tests you have had for them to review.  You can find a neuro-ophthalmologist on the AAO.org www site, in the find an eyeMD section.

Dr. Feldman

Sandy T. Feldman, M.D., M.S.
ClearView Eye and Laser Medical Center
San Diego, California
Helpful - 0
712568 tn?1268104907
Thank you so much for your suggestions. I went and saw my opthomoligst again today, and he said there is nothing wrong with the retina, or the optic nerve as he can see. He said it could be a pinched nerve in my spine?? That is shutting off some of my vision? He also said there could be some pressure in my brain that is leaning on the optic nerve. But he also tossed around the idea of MS again. UGHHH!! I keep telling everyone I want to see an neuro opth. but why isnt anyone reffering me to one? They also dont seem to be listening to the other symptoms. Bowel incontinence, SEVERE back pain, vertigo... etc... I don't get it.
But I appreciate your feedback and ideas, anyone think of anything else, please let me know!! :)
Helpful - 0

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