I have a long history of MS being dx in 1991 but with 13 years in limbo prior to that.
On June 1st I woke up with bilateral scotomas i.e. blind spots in my central vision.
The protocol with my NHS trust is to refer to an optician. Mine happened to be on the list. Three examinations in three weeks and my Optician declared my eyes healthy. So concerned about this that I rang my MS nurse who in turn arranged an appt with my Neurologist. After eye tests with him he suggested it was as above …sub clinical optic neuritis but due more to ageing with MS. I’m to get an Evoked Potential Test to compare with previous ones in order to confirm or rule out ON.
I still wake up each morning with these blind spots but they dissipate within a few hours leaving a speckled patch in both eyes. Just wondering if anyone else has had the same, or in fact heard of it.
Reason for posting at this time of night is the double whammy of Uthoffs Syndrome brought on by the heat humidity of today.
Hi. This probably won’t be of any help but I have a central scotoma in my right eye. It was firstly picked up on an eye test forty years ago (yes really) and then not mentioned by any optician until about 1991 when I was referred to an eye specialist. He said that it was nothing to worry about and was just one of those things (well, it’s only in my right eye which is the worst one anyway) When I have an eye test (worn glasses for ever and contact lenses for years until about 15 years ago) it is always obvious - feels as if there’s a hole in the centre of my vision and I have to look ‘around’ that hole
Dxd December '14 with all tests including the evoked potentials. Always thought that ‘evoked potentials’ sounds like a boy band… My eyesight has got worse over the past couple of summers. Yes, it is optic neuritis.
The MedDay trial for Biotin B7 - was originally for improving optic neuritis in PPMS. lt certainly would be worth taking it. Biotin also helps with bladder control.
l have taken it for 15months now. And about a year ago l had ‘Multi-functional Lens Replacement Procedure’ - so now l do not have to wear glasses and my eyesight is perfect. lt will not deteriorate and l will not get cataracts.
Thanks for your reply and interestingly my Neurologist told me that it, or they’ve, probably been there for many years but it was then on that day that I first noticed it . I’d got up for the loo at 4.30 am and because it’s summer, the bedroom was half - lit or dimly lit, then as the light got better, I hardly noticed them. My optician himself is well clued up on MS and had discounted Optic Neuritis by running a test for something called The Paulfrich Phenomenon (sp?) . He swung a pendulum back and fore in front my eyes and if it is ON then you see it going round in circles, whereas without ON, it swings back and fore horizontally - and that is how I saw it. Neurologist claimed that it only discounted Acute Optic Neuritis and explained that ‘subclinical’ means ‘ongoing’ or ‘past’ eye damage.
I forgot to mention that he’s written to my Optician for a copy of the photo he took of the back of my eyes to check for Optic Disc pallor, and also the print out of of my peripheral vision test. That showed a teeny bit of age related macular degeneration, but not bad enough for a referral to Opthamology Dept of my hospital. I’ve also had a Vit B12 blood test , at long last after pestering my surgery for years.
Thanks again - I know it sounds stupid but at my age (61) it’s comforting to know it’s MS, instead of a new health problem to deal with.
When I had an eyetest a few weeks ago (resulting in stronger prescription) the optician showed me the pale stuff on the disc on the photo of the back of the eyes.
Apparently I (like most people of our age - I’m - only just! - 64) have cataracts but nowhere need to be ‘done’ yet’. Spacejacket - is this what you had done?
A friend of mine had his eyes done - the Lens Replacement - he had worn spectacles all his life [60] - we were so impressed as he is rather a ‘wimp’. So this encouraged us. Several of my friends decided we would have it done. All fed up with having to wear specs for reading etc.
We looked into it for a while - and chose to go to Space Healthcare Leamington Spa - to a Dr Mark Wevill - we read lots of reviews and he is supposed to be one of the best eye-surgeons. The whole procedure from the initial free consultation and tests to see if we were ‘suitable’. The lens replacement is almost the same as a cataract operation except they replace your lens with a multi-functional one that gives you 20/20 vision. Best thing we ever did. All of us are so thrilled with the results. lt did cost me £5500 - but you add up the cost of specs over the years and it soon mounts up.
lt took about 15mins to do one eye - and you do not feel a thing. The eye is frozen first with drops.
Now this is not Laser treatment - that is for younger people who cannot see distance.
Once done - you never need it done again - never need glasses and will never get cataracts. One of my friends already had cataracts - so this was remedied with the lens replacement.
Now l can read all the tiny print on pill packets etc. As well as long distance and middle distance - read all the credits etc on the television.
I have had bilateral dropping out of one quarter of the visual field as part of relapse years ago. That wasn’t an eye problem, though - the problem was deep in the brain. I had a bit of ON at the same time in one eye only, but that was relatively mild. It’s awfully bad luck to get bilateral ON and not terribly common either, as I understand it. Poor you.
To be honest when I rang my GP to ask whether I should go to my emergency eye clinic, her first words were “Is it Optic Neuritis because of your MS?” I said, "No, not at all " because I had no pain with it. Anyhow after three Optician visits in three weeks, I intended going privately for a ‘second opinion’ . I’d already reported it to my MS Nurse in my three monthly review clinic. We went on holiday to Devon straight after that appt. but when we got home and it was still there, it was my husband who pressed me to ask to see my Neuro after reading something on the MSIF website and I got to thinking I might, after all these years have a new lesion in another part of the brain.
Time will tell I guess after I’ve had the EVP tests and my Neuro has had the Opticians’s report what the exact cause is.
OK, Amethystina, and others …
Here is a quick course on the human visual system:
The retina is the stuff at the back of each eyeball. At the very back are the receptor cells (rods and cones), one lot do colour, while the other lot do differences in brightness (works as movement detectors as well).
There are three main layers - the receptors are linked to the bipolar cells just in front of them in a complex network, and the bipolar cells are linked to the ganglion cells just in front of them in another complex network. This means that the front two layers are transparent. The double network enables what we psychologists call “feature detectors”, which means they can recognise shapes like the letters you are reading now.
So, an optometrist (guy who actually does the eyetest) can look in and see if there are problems with the lens (like cataracts), or if there are problems with the retina (starting to detach, or losing its transparency, or glaucoma).
The visual field test does more than just see if you are OK to drive. You see, there are two of them (one for each eye) and there can be problems if the internal pressure in the eye is making the nerve bulge where it goes out of the back of the eye (called cupping) which is glaucoma. The big thing is that the optic nerves divide after they have left the eyeballs, and part of them cross over.
The outer halves of each eye feed straight back to the visual cortex on the same side of the brain, while the inner halves of each eye feed the opposite side of the visual cortex. There is a crossover behind the bridge of the nose
So, we can have a visual examination of the eyeball internals themselves.
We can have a visual field test which tells roughly where there is a problem - but not which side.
Then the VEP can tell if there are differences in the transmission speed of nerve impulses from either eye.
The next step is to see an opthalmologist who can put the lot together and know when to call for an MRI, which will pinpoint where on a nerve the problem is.
Some vision problems can be handled by surgery.
There is a lot more to human vision than this.
Geoff, thank you for this. I think I now understand better my own dx from a few years ago of (and yes, I have just dug out the letter) ‘right upper homonymous quadrantopia (probably secondary to left temporal multiple sclerosis lesion’. At least it did once I had got my head around what was ‘left’ and what was ‘right’ in this context… Thank you!
I was very lucky indeed and it all resolved completely, as confirmed in due course by another visual field test at which everyone (including me) was much more cheerful than they had been at the first one. Eye trouble is just horrid.
Agreed.
Then you add in Diplopia (double vision, complex again), incipient cataract (one in each eye) and a parent with glaucoma there is a heredity component to this), and you can see why I wish I did not know quite so much about human vision.
Coming back to this because after all these months because I received my Neurologist’s final verdict yesterday.
It’s called Subclinical Optic Nerve Demyelination.
The way I had it explained to me was roughly… both my optic nerves were damaged so long ago that the ‘wiring’ is wearing thin and struggling to cope. The question as to whether it’ll get worse is ‘how long is a piece of string?’
Given all that, on a positive note - I’m not totally blind. I can’t see at all in the dark and struggle to see in dimmed light e.g restaurants are the worse for that happening. At home I use a hand torch if I need the bathroom in the night rather than disturb my OH by putting the lights on. Night lights aren’t bright enough.
I still have the blind spots in dimmed lighting but during the day because it’s lighter, I only get like a thin speckled veiling over my central vision - and if you think of a circle being 100%, then my it affects 90% of that circle ( in both eyes) . The other 10% (peripheral vision ) is clear. Surprising how we learn to adapt too in my case.
If there’s anything to be learned from this, then if anyone gets visual disturbances, please press to get it thoroughly investigated because our eyesight (to me) is just as important as the rest of our bodies - for one thing we rely on our eyes to help us balance
