Blind and Visually Impaired Community
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Waiting on a diagnosis (self.Blind)
submitted by sphericaldiagnoal
Hi guys,
I'm 27. I recently went to the eye doctor because I was having trouble driving at night(glare, halos, rainbow vision, and light just kind of...hurts) and have been noticing blank spots in the vision in my right eye. I have a strong family history of glaucoma, so I thought it was most likely that.
After a bunch of tests, my doctor found my my visual acuity in my right eye is 20/30 with best correction, and I have blind spots in that eye as well. My optic nerve looked healthy in the regular exam but when she did a scan she said there was nerve fiber thinning consistent to where my blind spots are.
Kicker is, she doesn't think it's glaucoma because my eye pressure was within normal range. She referred me to a neuro-ophtamologist, and mentioned that I most likely need an MRI and that something might be "pressing on my nerve".
Soo...I'm pretty scared. The neuro-ophtamologist can't get me in until January. Has anyone had anything like this before? Any suggestions for things I should be paying attention to/doing while I wait for a dx?
KillerLag 5 points 3y ago
There is the possibility of glaucoma, even with normal pressure range. It isn't very common, though.
https://www.glaucoma.org/glaucoma/normal-tension-glaucoma.php
Hopefully the MRI and the neuro-opthamologist can tell you more when they look.
https://www.glaucoma.org/glaucoma/normal-tension-glaucoma.php
Hopefully the MRI and the neuro-opthamologist can tell you more when they look.
sphericaldiagnoal [OP] 1 points 3y ago
Thank you for the reply! I hadn't known about normal pressure glaucoma. Hopefully I can get everything figured out in a reasonable amount of time.
nonamesleft1 3 points 3y ago
There is also the possibility of Pigmentary Glaucoma. It tends to strike earlier. The kicker with it is that you can have normal pressures at one appointment and very elevated pressures at another appointment. It's hard to pick up based on pressure reading alone.
Did your eye doctor perform a gonioscopy (numb your eye, put a prism lens on it and ask you to look in different directions)? This test, which doesn't hurt by the way, can see if you have pigment that's come loose.
The symptoms you describe, combine with your age, make it a good possibility.
Are you also myopic? (a minus prescription). Do you by chance get blurry vision after strenuous exercise?
Did your eye doctor perform a gonioscopy (numb your eye, put a prism lens on it and ask you to look in different directions)? This test, which doesn't hurt by the way, can see if you have pigment that's come loose.
The symptoms you describe, combine with your age, make it a good possibility.
Are you also myopic? (a minus prescription). Do you by chance get blurry vision after strenuous exercise?
sphericaldiagnoal [OP] 1 points 3y ago
It's funny you mention that about the pressure, as I have had inconsistent pressure readings, sometimes high sometimes normal. I
I am nearsighted, that's the same thing as myopic right? I also have astigmatism, but only in my bad eye. That's been the case since I was a kid though, not a new development like everything else. Never noticed blurry vision with exercise, but I also can't remember the last time I exercised more than my walking.
I am nearsighted, that's the same thing as myopic right? I also have astigmatism, but only in my bad eye. That's been the case since I was a kid though, not a new development like everything else. Never noticed blurry vision with exercise, but I also can't remember the last time I exercised more than my walking.
nonamesleft1 1 points 3y ago
I would highly recommend you see an ophthalmologist who will perform a gonioscopy on you to rule out pigmentary glaucoma. I have it myself and I was monitored for 10 years for high pressure prior to diagnosis. If it is pigmentary glaucoma, considering you've already lost some vision, you need to start treatment now in order to hopefully prevent further vision loss.
Get in with a specialist a.s.a.p. Emphasis to your optometrist that you need to see someone sooner rather than later. Perhaps even she can perform gonioscopy to see if there's pigment in your trabecular meshwork.
It's highly hereditary, tends to strike males between the ages of 25-40, myopic (nearsighted), mostly taller, generally thinner, often very intelligent, driven and perhaps more anxious than relaxed. While you don't need to fit that profile (I certainly don't....female to start with haha), that profile is more often than not, the profile of someone with pigmentary glaucoma.
I would bet that based on what you described, you have this. But hopefully I'll lose this bet.
All the best :)
EDIT: If you have a really close up mirror (like 10x magnification), have a look at your eye....with my eyes, I can actually see pigment rings and lines. Something like this. https://i.ytimg.com/vi/pPyo-vV4010/maxresdefault.jpg Mine's more like the left, but mine is easy to see because I have blue eyes. See if you can see anything like that :)
Get in with a specialist a.s.a.p. Emphasis to your optometrist that you need to see someone sooner rather than later. Perhaps even she can perform gonioscopy to see if there's pigment in your trabecular meshwork.
It's highly hereditary, tends to strike males between the ages of 25-40, myopic (nearsighted), mostly taller, generally thinner, often very intelligent, driven and perhaps more anxious than relaxed. While you don't need to fit that profile (I certainly don't....female to start with haha), that profile is more often than not, the profile of someone with pigmentary glaucoma.
I would bet that based on what you described, you have this. But hopefully I'll lose this bet.
All the best :)
EDIT: If you have a really close up mirror (like 10x magnification), have a look at your eye....with my eyes, I can actually see pigment rings and lines. Something like this. https://i.ytimg.com/vi/pPyo-vV4010/maxresdefault.jpg Mine's more like the left, but mine is easy to see because I have blue eyes. See if you can see anything like that :)
sphericaldiagnoal [OP] 1 points 3y ago
Thank you for all the information! I really appreciate it, and I'll definitely mention to my doctor what you said and ask about a gonioscopy. Fingers crossed I'll get some answers soon.
nonamesleft1 2 points 3y ago
Fingers crossed for you. I hope that you don't have it, but please let me know if you do. We can be of some support to each other if you like :)
BlueIr1ses 2 points 3y ago
Ask your referring ophthalmologist for an MRI prescription (brain - with and without contrast). Once it's completed, she can forward it to the neuro-ophthalmologist. If there is anything urgent, he or she may be able to see you sooner. Are the blind spots in your periphery or central vision? Do you have any autoimmune issues that you are aware of?
sphericaldiagnoal [OP] 1 points 3y ago
I hadn't thought about asking my doctor to order the MRI for before the appointment, that's a really good idea. The blind spots are in my peripheral vision, the biggest one is near my nose. I'm not aware of any autoimmune issues. My doctor did mention that this could be an early sign of MS and that needs to be ruled out.
B-dub31 2 points 3y ago
My vision loss started with a blurry shaded spot in the visual field of my left eye that was noticeable with my right eye closed. Ophthalmologist thought it was a TIA (mini stroke). Despite treatment and getting healthier, my vision loss worsened with seemingly no explanation. Turned out I have a blood clot in my brain causing increased intercranial pressure. It took four MRIs and a lumbar puncture to figure it out, so keep pressing until you get answers!
sphericaldiagnoal [OP] 1 points 3y ago
I'm glad you were able to get a diagnosis, even if it took so long. What did they do for the blood clot?
B-dub31 1 points 3y ago
They determined I have a genetic blood clotting disorders, so I’m now on lifelong blood thinners. I hope that you find a doctor who is willing to keep pressing to find the answers you need.
TheBlindBookLover 1 points 3y ago
Hi. I would keep a daily record of any symptoms related to your vision loss. Also, bring that record to your appointment so that you don’t forget any information. I hope that this helps.
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