Hi,
I’m from Scotland.
Sorry if I haven’t explained very well.
Like I say I have other issues but will tell you about my akinetopsia.
Around 20 year ago I would notice the computer screen jump slightly when I scrolled down. I asked my husband to speed it up but that didn’t help, It was always there, I just thought it was “normal” for me, that I must be more sensitive to it.
I had a few episodes over the years where I realised I didn’t see things, I had no idea why and thought it must be because I wasn’t concentrating.
I was diagnosed with FND about four year ago, due to cognitive and sensory issues, I never mentioned my vision to my neurologist because I still thought it was normal.
Then I started having more vision issues, not seeing things, not understanding what I was seeing, having strong afterimages etc, and the jumpy vision became much more noticeable.
We bought a top tv to help smooth motion down for me and it has helped me see things better than if I look at someone else’s TV.
I think my neurologist is more annoyed than interested that he doesn’t know what’s going on 
but he did say he would keep an eye on me and he would see me again in 9 month. He didn’t want to do more scans at this point.
During my research (well, googling 
) I did find some interesting articles. Would you like to PM? I don’t know how to do it but I could send you the articles if you are interested.
If I watch a movie I watched even a year ago I can see a decline in my vision, it’s progressing very slowly. This doesn’t mean you have it for the same reason I have it, and yours could start improving.
I now don’t see anything as I used to see it. I always enjoyed detail, I had my own little art business, i loved painting miniatures but haven’t been able to paint for a couple of years now. And surrendered my driving license three year ago.
But I still pass a normal eye test, I still have sharp vision, but my brain doesn’t always understand what I am looking at so will make bits up or miss bits out.
Have you noticed any other changes in your vision?
I’ll PM you later on. I feel this is off topic to MAV. Or maybe it isn’t?
No problem guys, please go right ahead, I’ve just moved it to a more suitable Category.
FYI PM’ing is restricted to Trust Level 1 and above, so @Heldo I suspect you will have to discuss what you can here in public for the time being until you’ve been with us a little longer and earned the automated upgrade of your account (by continued positive engagement with the forum).
You are more than welcome to discuss this here, it is very similar to symptoms of VM/MAV and thus there is relevance, even if the conditions are not exactly the same?
I can’t pm yet as I am new here. I’m quite ok about discussing it further.
Ok great. Thanks James.
Gosh this has me thinking about it a lot with so many questions as I want to know if this is what it is.
-
on the TV, have you always seen after images as well as the stop start motion? When you first noticed it.
-
do you have a lesion on your V5 area in occipital lobe?
-
have you filmed your eyes when watching tv? Is there nystagmus (slow drift of eyes and then a sharp repositioning)
Other vision issues for me include a shimmering around certain objects. I used to see movement but that has stopped. In the morning when my nystagmus is bad, my vision moves.
It all started after an Epley manoeuvre for Bppv. I wonder if it is caused by a tiny ischemic stroke on the V5 area or created another ‘migraine’ lesion there.
I have no issues with movement in my external environment, only the tv.
I really hope it is innocuous and not progressive. If I knew this, and it came and went, I wouldn’t be so worried. I feel for you, it must be awful.
Hi again.
I just want to mention no medical professional has confirmed I have akinetopsia, but I am very aware of a gap in movement so I have came to that conclusion myself. I have read it can occurs with slight trailing.
When I first noticed it on the TV it was the jumping I noticed, it was ver slight at the start. Most noticeable when objects moved across the screen. And as I say, it’s affected by the frames. If the image moves fast I do observe a “ghost” trail, but it hardly visible, it’s the gaps I’m most aware of.
I have multiple lesions but no one has told me where, I was told they are probably age related (I did wonder about that as I know the v5 region deals with movement.
I do get nystagmus now if I am trying to “lock onto” a object, it’s connected to me not seeing what’s around me sometimes but I feel this in my eyes when it’s happening and I don’t think it’s happening when watching TV. My neurologist couldn’t see nystagmus when he checked my eyes.
I have tried that manoeuvre too, it didn’t help my vertigo it just made it worse! It’s interesting though that you also have vertigo, I had never connected it with vertigo but maybe it is? Do you get tinatus? Mine is constant.
It wasn’t noticeable to me in the real world at first, but slowly crept in as the gaps in images became wider.
As I say, other vision issues have also started now. I am baffled why I have it!! Even if it had been caused by a lesion my brain should have started working around it, so my vision should be getting better not worse.
I wonder if I have a poor blood supply to the visual processing part of my brain?
I was told I have a area of abnormal blood supply in part of my brain which is normally of no consequence but I can’t remember what it’s called! I will look it up. It’s basically a area of blood supply we have as a fetus. It has large rather than small arteries. It might have no connection what so ever but who knows.
I have found it, I have a cerebral venous angioma
Thanks for that, you certainly do have quite a lot going on.
Is it triggered by an object in the foreground moving? Mine is triggered by the background panning of the setting. Not so much by a person walking… if that makes sense.
Did it come and go? Or just stay all the time?
I’m seriously going to investigate these lesions. I’m going to bring an MRI from years ago and compare that with the MRI that was taken after the Epley next time I’m with neurologist. Specifically looking at that area! Not till June though.
I sometimes video my eyes watching tv myself. You can see the nystagmus then. The doc won’t pick it up if you’re not provoking the symptoms.
It totally sucks!! I really hope it doesn’t get worse for both of us. I’m still young(ish) and want to continue living a good life!!
You need to see another neurologist who is willing to listen and diagnose. It’s clearly that. Or… I wonder if it’s intractable aura related and prophylaxis migraine meds might work for you?
I’m in Australia by the way.
I would be really interested to know if there are any changes on your MRI.
I totally understand the panning thing, if the camera swings across the screen It totally blurs for me now. Before it would just be jerky. I hate watching programs where the cameraman and the subject are both moving, It’s doubly annoying!
I get a lot more “interference” on TV now, very very hard to explain.
I also have a lot of sensory issues, most are common in loads of diseases and as I say, I have a FND diagnosis so am comfortable with them. But with this “akinetopsia” you are the first person who I have spoken to who seems to be seeing how I see! People do get it for short times, but 24/7 seems so rare, and I hate not being able to work out why I have it!! It was a lonely place not being able to share with someone who would understand, who sees what I see. Perhaps you can find others???
I guess for me only time will tell (hopefully!) what’s actually going on in my brain.
It great you are being so proactive! Please keep me in the loop, and if I get any answers I will let you know. And hope you let me know too. 
Sorry, just a add on I don’t think nystagmus is playing a part for me, even though I know I can have it occasionally because when I look at the face of someone talking in tv, their eyes are still and clear until they blink, their mouth goes in and out of visibility when they talk and their skin smudges as they slowly move. I would imagine nystagmus would cause the whole face to move in unison, not just sections of it?
Ok great. Let’s keep in touch. Hopefully they can find answers for both of us
I have decided to be a bit proactive too, I have just set up a private Facebook support page for sufferers of akinetopsia, hopefully over time I get a few members and we might be able to compare notes and share coping strategies.
Let’s see how many of us are out there!
Just a short message to let you know that I have spoken to another lady who believes she may have akinetopsia, she also has Bilateral Vestibular Hypofunction which I thought was interesting.
She has joined my Akinetopsia support group on Facebook.
Ok cool. I just joined it. I haven’t noticed this symptom this week. So good news.
That’s great news Belindy, hopefully it will disappear for good 