Somebody must know something somewhere about Myelinated Retinal Nerve Fibres?!

[BeyondDrinksAndKnowsThings]

I have been told that problems with my peripheral vision are due to MRNFL, I also have a load of other health problems that may or may not be related (EDS, TN, dysautonomia, autoimmune arthritis). Ophthalmologist said it was unexpected given my medical history - apparently it can be related to various genetic disorders but none that I have (though I have found articles that link it to IIH and chiari, which are also correlated with eds). I'm under observation for a bit to see how it progresses.

But all I can find online are scholarly articles. Which is fine, I can read them - I'd just like to speak to a person about it, iykwim?

Can anybody here help?

Bump :)

Sorry, bumping again! Told you I was struggling to find someone!!

I wonder if this will just fill up with 1000 posts of me bumping?

They're not usually associated with any condition, they usually just something people are born with. Although I seem to remember they can occur after a bout of uveitis.
There is no treatment for them, but they are usually completely asymptomatic.
In most people they occur around the optic nerve head, so usually only cause enlargement of the blind spot, rather than peripheral vision problems.
What peripheral vision problems are you having?

There's a black splodge on my vision, right side of right eye. It's kind of difficult to explain, it's almost like the edge of my vision where it's black, except I notice it as it hasn't always been there! The hazy peripheral vision bit is then further forward than in the other eye, almost directly forwards. I guess it could be worded as enlarged blind spot, except it extends further up, but I've also recently had trouble with double vision so I get it all muddled up (apparently related to the EDS). I'm short sighted, but not massively so - though my right eye is the worse one.

It shows up on my visual field test, but I don't have a copy of the results here to tell you exactly what it says.

I've seen that it's usually assymptomatic. It appeared when I had a few months of really bad TN, so I assumed it was somehow related to that for a while - took over two years to get my opthomologist appt!

Can you see the black splodge when you have both eyes open?

Have you had an OCT done yet?

Yep it's there with both eyes open
And yes I'm quite sure that was what they did while I was there last time

Have opticians previously mentioned the myelinated nerve fibres? They are impossible to miss (and actually very pretty.)
If so, maybe you've just become more aware of them. Did becoming more aware of it co-incide with anything else? I'm wondering it something in the optics of the contacts/glasses has caused you simply to become more aware.

If not, it does sound like they have done everything they can and I wait and see approach is the best plan.

There are a couple of things I've recommended to people who have large floaters in one eye that may work in your case. One is hypnosis and the other is actually blurring the affected eye slightly, potentially with a bifocal contact lens.

No, they've never been mentioned before. I'll have a chat to my optician and see if they just didn't tell me (or I forgot! )

It was at the time of my TN attack that I first noticed it was more blurred, and noticed the black spot from there. Wonder if pain nearby made me notice?

I have an old visual field test somewhere, I'll see if I can compare them!

Possibly - hope it all settles down soon.