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Eye mystery

Posted by muherdfan05 @muherdfan05, Jul 2 1:36pm

Hi,
A couple years ago, I randomly over the course of five days had decreased vision. I went from 20/20 to 20/150 by day five. I have 20/20 vision but still have a central scatoma. It started by me seeing flashed of light in the upper right part of my vision. Since then I have seen five eye doctors and nobody can figure it out. All tests were negative. I had a CT Scan of my head, a MRI of my brain and orbits with and without contrast with a MS protocol with were all negative. I have had labs MOG, NO, lysozyme, CRP, TB, TPA, syphilis, angiotensin converting enzyme, sed rate, CBC with diff, Lyme, ANA, vitamin B1, folate, vitamin B12, anti-dna, extended ena profile, PTT, PT INR, lipid profile, bmp, insulin levels - all of which were negative.

After 5 eye doctors not being able to figure it out, I asked my PCP. She ordered a MTHFR gene test which resulted positive for the MTHFR homozygous C677T gene.

Of note, at the time this started, I was 72 days post COVID, and I was 7 months post partum and had started on oral birth control 2 months prior.

Most of my vision has come back. Most of the notes from the eye doctors say migraine (which I do have, otherwise no health issues). I just have this central scatoma and forever fear that it is going to happen again and nobody knows what to do with me/ what is wrong with me.

I have good days and bad days. Historically, it has looked like I'm looking under water. Some days I have very little issues at all. At times, I see wavy lines.

One eye doctor told me I sounded like a glaucoma patient but by exam I'm not one. It's so confusing.

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jpatterson52 | @jpatterson52 | Jul 3 7:25am

last summer i was at the computer and lost my central vision, just the central vision, this lasted about 15 min and really scared me. The next day i was having flashes of white spots in both eyes, i went to the ER and had a c/t scan, i was cleared of anything going on. i went to my eye doctor and he said i had ocular migraine, ( i dont have migraine headaches) since last summer i have had two more of the odd flashes of light in both eyes, my vision is good for my age (71)
when this isnt going on. (i have also had an MRI which also showed nothing bad. i just try to stay calm when this happens,

REPLY
2 replies
muherdfan05 | @muherdfan05 | Jul 3 8:18am
In reply to @jpatterson52 "last summer i was at the computer and lost my central vision, just the central vision,..." + (show)
@jpatterson52

last summer i was at the computer and lost my central vision, just the central vision, this lasted about 15 min and really scared me. The next day i was having flashes of white spots in both eyes, i went to the ER and had a c/t scan, i was cleared of anything going on. i went to my eye doctor and he said i had ocular migraine, ( i dont have migraine headaches) since last summer i have had two more of the odd flashes of light in both eyes, my vision is good for my age (71)
when this isnt going on. (i have also had an MRI which also showed nothing bad. i just try to stay calm when this happens,

Jump to this post

Thank you for your reply! Oddly enough, I was at the computer when mine started and most of my notes, they have declared as migraine. The strange part is, it's never completely gone away. I know what you mean though, deep breathing and staying calm in a situation is hard sometimes!

They placed me on migraine medicine and it helped with pain but the vision issues still are there.

REPLY
gift440 | @gift440 | Jul 3 9:22am

What was on the computer screen when this occurred and how do you connect to the internet. I would check with provider of your broadband and ask if on that date anything unusual occurred.

I taught VI/ Blind students and nothing is too remote to investigate with concerns about sight.

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1 reply
crossette | @crossette | Jul 8 8:56am

I have glaucoma and none of these symptoms "sound like" glaucoma! I would write that doctor off. My wife has had NAION and she has the wavy lines, tilted vision, etc. This usually occurs suddenly overnight but sometimes over the course of days. Did they check your optic nerve and your cup to disc ratio?

REPLY
1 reply
bunstuffer | @bunstuffer | Jul 8 9:13am
In reply to @jpatterson52 "last summer i was at the computer and lost my central vision, just the central vision,..." + (show)
@jpatterson52

last summer i was at the computer and lost my central vision, just the central vision, this lasted about 15 min and really scared me. The next day i was having flashes of white spots in both eyes, i went to the ER and had a c/t scan, i was cleared of anything going on. i went to my eye doctor and he said i had ocular migraine, ( i dont have migraine headaches) since last summer i have had two more of the odd flashes of light in both eyes, my vision is good for my age (71)
when this isnt going on. (i have also had an MRI which also showed nothing bad. i just try to stay calm when this happens,

Jump to this post

Sounds like macular migraine. Mine start with the crescent shaped moving lights. Then the blind spot. It lasts 15-20 minutes. I started having these years ago after a car accident. In the beginning, I had them several times a day but frequency reduced over time. Now I have them once or twice a year. They always come when I'm stressed.

REPLY
1 reply
muherdfan05 | @muherdfan05 | Jul 8 12:03pm
In reply to @crossette "I have glaucoma and none of these symptoms "sound like" glaucoma! I would write that doctor..." + (show)
@crossette

I have glaucoma and none of these symptoms "sound like" glaucoma! I would write that doctor off. My wife has had NAION and she has the wavy lines, tilted vision, etc. This usually occurs suddenly overnight but sometimes over the course of days. Did they check your optic nerve and your cup to disc ratio?

Jump to this post

Yes, everything comes back normal. They did say I had some thinning of my optic nerve on physical exam but they said I could have been born that way and they couldn't officially declare it true thinning of my optic nerve. It's so strange.

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muherdfan05 | @muherdfan05 | Jul 8 12:05pm
In reply to @bunstuffer "Sounds like macular migraine. Mine start with the crescent shaped moving lights. Then the blind spot...." + (show)
@bunstuffer

Sounds like macular migraine. Mine start with the crescent shaped moving lights. Then the blind spot. It lasts 15-20 minutes. I started having these years ago after a car accident. In the beginning, I had them several times a day but frequency reduced over time. Now I have them once or twice a year. They always come when I'm stressed.

Jump to this post

Interesting, I have nerve considered a macular migraine. I will look into that! Thank you!!
It does get worse with stress and lack of sleep. They thought at first it was central serous. I had some very stressful life events (better now and the eye has gotten a bit better; just looking for the rest of the vision to resolve).

REPLY
muherdfan05 | @muherdfan05 | Jul 8 12:06pm
In reply to @gift440 "What was on the computer screen when this occurred and how do you connect to the..." + (show)
@gift440

What was on the computer screen when this occurred and how do you connect to the internet. I would check with provider of your broadband and ask if on that date anything unusual occurred.

I taught VI/ Blind students and nothing is too remote to investigate with concerns about sight.

Jump to this post

Interesting! Thank you for that! I never thought about it!

REPLY
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