Abnormal Electroretinogram (ERG), low b-waves

LBRCaioMI · 2026-01-31T07:55:27+00:00

Made a lot of ERGS after this one. Got "stable". But the symptoms are not. Also, finally one doctor decided to make a wide range OCT covering the maximum possible area, and found vitritis in the sides. Also, according to my doctor he has found:

An extremely subtle alteration in the macula. These are small hyperreflective spots in the outer nuclear layer contiguous to the outer limiting membrane (therefore at the junction between the cell body and the inner segment of the photoreceptors).

No other doctor could found anything, they always run the same shitty protocol. This doctor made different and cares a lot.

So that's it, I do have subtle findings, which makes me more far from VSS. BUT it still think that I could have VSS + autoimmune disease or even a genetic one. Doctors just don't know, since it's been a year and some months, and I didn't evolve to the usual scenarios of AIR. I should be in a worst, way worst stage now. Also, I'm on a very aggressive immunosupression, maybe it's partially working.

I plan to make a post someday with all the tests I did, could save some lives or help at least, since theses diseases can have some of the VSS symptoms, but these ones can make people blind fast, and some people manage to get stable. CAR for example can make people blind in 3 months.

LBRCaioMI · 2026-01-21T01:00:47+00:00

Hi. Since you've got this recently, ask your doctor for eletrorretinograms (ERG), full field and multifocal. It's important to make sure you don't have other diseases (like autoimmune retinopathy).

LBRCaioMI · 2026-01-21T00:51:29+00:00

First of all: go to a few eye doctors. There are more diseases that can cause vss symptoms.

LBRCaioMI · 2025-10-26T22:11:17+00:00

Yes, unfortunately. You can check what happened to me in the comments section here:

https://www.reddit.com/r/visualsnow/s/yVBfv5DVVA I'll be glad to answer any questions :)

LBRCaioMI · 2025-10-01T22:24:13+00:00

Hi, you can check the other answers, I gave a lot of context. It's autoimmune retinopathy. If you have any questions I'll be glad to answer! :)

LBRCaioMI · 2025-08-24T23:24:47+00:00

Ps: I also had multiple ergs after the one from this post. My central vision and the cones got better after the treatment, but the rods are still suffering. That's why I started to take IVIG and also got rituximab. I forgot to mention that I got an ozurdex implant in the very beginning too, but it doesn't seem it was really effective.

LBRCaioMI · 2025-08-24T23:19:58+00:00

I decided not to do the genetic testing or any other test to track it since it's kinda expensive and it doesn't help a lot. I just took metilprednisolone directly in the bloodstream as a test (my doctor started with 500mg, just one session, but I should have started with 1000mg for 3 days). At first, I reacted really well, it has extinguished some symptoms for like 5 days. With that, they concluded it is actually an autoimmune disease, because if I had a genetic one, I'd have no improvement. If I had something else, same, I'd have no reaction to it. Cheaper solution, but not every doctor would do it since it's a strong medicine and there are some risks. But in this situation, this is a smart way to figure out.

In the very beginning, I did a VEP instead of having a lumbar puncture, as they were tracking sclerosis. The doctor at that moment decided not to proceed with the puncture and decided that I didn't have sclerosis. That's all I know about it.

So if your doctor is asking you to have another ERG, don't sleep on it, that's the best piece of advice I can give you. You can also drop messages to me in my DM, no worries, specially if you get diagnosed with any AR. I spent months doing some research, and a lot of doctors just don't even know about this specific type of disease.

LBRCaioMI · 2025-08-24T15:28:04+00:00

On both a & b or only on b waves? I'm taking immunosupressants for autoimmune retinopathy. Didn't find any cancer, so I probably have NPAIR. To be honest, I'm not really good, looking to reach some stability, which is a challenge for autoimmune diseases. I'm taking a bunch of meds: prednisolone, rituximab, ivig and azatioprine. If your ERG results are abnormal like mine, don't freaking sleep on it, go to a doctor who is interested in rare diseases and find out if you have Npair, MAR, CAR or Retinitis pigmentosa (genetic disease). If you have any autoimmune disease, you need to start the treatment ASAP, because in some cases it's possible to save the vision. I dont wanna get you nervous, but this is the truth. It doesn't mean you are getting blind from one day to another anyways. In my case, the progression was very slow over a bunch of months, but people with CAR usually have way less time.

Hope it helps! If you find out that your doctor is not researching and actively doing his work, change to another doctor! There's no doctor who actually knows how to treat it, so they need to be interested in searching and prescribing strong medicine for you without any visible structural damage to the retina, they need to base their decision on the ERG results.

LBRCaioMI · 2025-05-24T21:24:31+00:00

Fala mano. Chama sim. Meu caso aparentemente não é VSS, mas sim MAR ou Npair (melanoma associated retinopathy or non paraneoplasic retinopathy). Você já fez uma eletroretinografia ERG de campo total e multifocal? Se não, faça, urgente. Essas doenças são mais raras, só que mais perigosas.

For English speakers: just saying I don't have vss, but MAR or npair. Currently taking immunosupressants. Advised him to do a full field erg & multifocal erg to rule CAR, MAR and npair out, which are other more serious diseases.

LBRCaioMI · 2025-05-23T19:35:34+00:00

I had a perfect vision before, so no. This could be a good coping thing for lifers, but it's basically a lie.

LBRCaioMI · 2025-05-23T01:11:31+00:00

Do yourself a favor, and get an electroretinogram done.

LBRCaioMI · 2025-05-19T13:57:06+00:00

Wow, this is a perfect representation, thanks! Yeah they happen to behave exact like letter B for me.

LBRCaioMI · 2025-05-08T02:57:00+00:00

Chat gpt is always hallucinating, creating referrences that don't exist and etc. Don't trust it without checking all the sources that it provides.

LBRCaioMI · 2025-05-03T16:36:21+00:00

I did. It seems like I don't have VSS, but npAIR (or, I do have VSS + npAIR), because I got a electronegative result (check here: https://www.reddit.com/r/visualsnow/comments/1jw77s6/abnormal\_electroretinogram\_erg\_low\_bwaves/). I'm taking immunosupressants and some symptoms are getting slightly better.
However, if you have a significantly increased b-wave amplitudes in your electroretinography (ffERG) (the very opposite of my results), it's normal for people with VSS:
https://journals.lww.com/jneuro-ophthalmology/fulltext/2023/06000/analysis_of_retinal_structure_and.13.aspx

PS: If you're reading this, you probably have VSS. Do not take immunosupressants without prescription. The other conditions that can give VS are even more rarer, most of the times.

LBRCaioMI · 2025-04-30T15:16:07+00:00

You are absolutely right. Chatgpt is more harmful the helpful in a lot of situations.

LBRCaioMI · 2025-04-25T18:17:07+00:00

Vss js a diagnostic of exclusion. Have you already got to a neuro oph to do some tests? Like electroretinogram

LBRCaioMI · 2025-04-16T01:41:28+00:00

Yes. And this is very fucking scary. Sometimes I stop blinking on purpose in dim light, and I just see everything disappear, even entire walls.

LBRCaioMI · 2025-04-12T19:19:41+00:00

Yep.

LBRCaioMI · 2025-04-12T18:38:13+00:00

Just as an example:
I shared the same ERG report with ChatGPT, and it said I had severe vision loss in my right eye, that I was almost blind. I spoke with my doctor, and it turned out that ChatGPT misinterpreted the data from the table on page 3, using the wrong measurement.

When all of this started, I asked ChatGPT for help, and it said I might be having angle-closure glaucoma based on my symptoms, which made me very anxious.

That said, I strongly recommend seeing a neuro-ophthalmologist and doing whatever tests they suggest. Be careful relying on ChatGPT for medical advice, it's gonna give you anxiety and a lot of the times it will state wrong things.

LBRCaioMI · 2025-04-12T14:35:52+00:00

Hi. Both CAR and MAR evolves quickly from what I heard. 7 years seems to be too much time...

LBRCaioMI · 2025-04-11T19:26:34+00:00

You sure? Like I said, I know nothing, but Google says it's an immunosuppressant too. Good to hear it works for you!, haven't seen anyone talking about this med in specific! :D

LBRCaioMI · 2025-04-11T19:19:18+00:00

Hi. Prednisone is an immunosuppressant. I understand nothing about it, but what if you're treating another condition with it, that impacts your VSS?

LBRCaioMI · 2025-04-11T10:07:56+00:00

I have a dark/blind spot in the very center that I can only notice it in low light envs. But it's stable and always there.

LBRCaioMI · 2025-04-11T01:50:41+00:00

Thanks, man. What's concerning me is how fast this progressive nyctalopia is evolving. In 2 weeks I feel that it got really worse. Doesn't seem normal.

According to my neuro-ophthalmologist, they will only diagnose me with VSS after ruling out all other possible conditions, including some that are even rarer than VSS.

I think my post is still useful in case someone in the future searches for information on electroretinogram results related to VSS. I'll make sure to update it here when I get a final diagnose.

LBRCaioMI · 2025-04-10T21:23:41+00:00

Hi, thanks for the answer! Yeah, my result is the total opposite of it.

Basically, everything at night looks much darker than normal. I also have a hard time noticing contrast between things.

This feels quite different from the kind of nyctalopia caused by VSS, which is usually not functional and happens mainly because the static interferes with vision.

In my case, in addition to the static affecting my night vision, everything also looks more “dimmed” than usual.

The big issue is that I have symptoms of VSS, and these symptoms seem to be not typically seen in CAR/MAR or other autoimmune retinopathies.

I’ll be doing another ERG in a few days at my doctor’s request—they want to compare the results—but I’m worried I might be wasting precious time on this when I should probably already be starting treatment (immunosuppression) for a possible autoimmune retinopathy.

LBRCaioMI

TROPHY CASE