lve had double vision - told i had some nystagmus. i have multiple eye diagnoses - on top of bilateral optic neuritis. i found trevor wickens ms gym eye exercises really helpful - very quick results - use them to top up if it comes back. just an easy idea!
Is it right that the dental reference system doesnt take into consideration how dental how infections affect the average pwms? It is right that they should not take into consideration that we cannot tolerate a dental infection even before there is " at least visible facial swelling" because of the neurological and relapse trigger effect?
To elaborate: i have quite bad neuro damage even though i am stable on tysabri. If i get an elevated temperature - anything past 37 degrees say due to infection, or get any slight infection/virus such as a tooth infection i become virtually unable to walk and i get bppv. I become unbearingly cognitively impaired.
How do I explain to other health professionals such as my dentist/nhs maxilo surgery provider that they can't treat me like a normal person? That if they do i literally wont be able to walk/talk/sleep/think?
How do you explain to people that your brain starts metaphorically boiling and your brain operating system goes blue screen?
Do they not have a higher duty of care for patients with chronic idleness?
What they call a non emergency- i.e. a small infection- is a very big deal to pwms.
I've been told (shouted at) today by the nhs surgery I was referred to by my dentist that basically im a queue jumping hypocondriac problem patient when i tried to ask the manager to please highly consider me on their cancellation list.
I work with an optometrist, daily exercises to make my eye's muscles work better, and also use prisms on my glasses
Despite this, and with a stable RM and no relapses, my headaches and nistagmus is getting worse. And my neurologist does not consider it completely related to my MS course, or he is not considering a change in the meds, currently on Cladribirine,
I'm becoming more and more disabled due to this and nobody is listening to me
I have shaky vision, generally in the distance, that has been called oscillopsia by my MS neurologist. It began with my very first MS lesion located in my brain stem (cerebellar peduncle) nearly 10 years ago. I have perfect distance vision, but now need reading glasses. If I wear one contact lens, or remove one lens from my reading glasses, I can use monovision (one eye for distance and one for reading) which instantly stops the oscillopsia. I assume it forces my eyes to act independently which stops the shaky vision. This is similar to patching, but much more attractive. It's not a permanent solution for me because my brain tends to resist monovision. My father was an ophthalmologist. He said that for unknown reasons about half of people adapt easily to monovision and the other half do not. Unfortunately I belong to the latter group. None-the-less, my monovision attempts still provide me with temporary relief from oscillopsia. Having a little control with this uncontrollable disease is appreciated.
I had jumpy vision a few years ago, after I had been diagnosed with SPMS.
I don't know which type of nystagmus it was, but I remember it caused nausea.
I didn't see an ophthalmologist about it, just my MS neurologist.
My dose of gabapentin was increased, and I found I had to cut back on some activities using my eyes. like reading and playing Sudoku puzzles. That seemed to take care of it, and it hasn't recurred.(I have resumed reading and my Sudoku addiction though.)
I have bouts of my vision rapidly jumping sideways to the left and back again, patterns sliding around and short episodes of ON. At night I often have large black jagged patches in my vision. I don't know if they are related or not.
I have an ocular flutter, is that the same as a micro square wave jerk? It makes it hard to track, read, and focus. 0.25 of Clonazepam at night seems to help. What is the difference between upbeat and downbeat nystagmus?
I developed ocillopsia in july 2018 when in relapse. I was watching a show with my son and felt very dizzy like i had vertigo. When i got home i asked my husband to look at my eyes as i felt so strange. He said it looked like i was looking out of a train window whilst it was moving. It turned out i have nystagmus when looking left or right (but particularly left), it is very much worse when i am fatigued. I was referred to an ophthalmologist who I saw October 2018 but no treatment offered as i was under neurology and they were going to be sorting a DMT. I had a vision test in march 2020 which was ok and i didnt need glasses by December 2020 my eyesight had deteriorated - i am still not sure why but i need glasses for driving now as i have double/blurred vision without wearing them. I was discharged by opthalmology after their inital assessment in 2018. I went onto Ocrevus in June 2019. I have regular eye tests as i find my vision worsening. Initially they tried me on gabapentin and then pregabalin but both medications worsened my fatigue and my nystagmus so i stopped taking them after a very short trial. My nystagmus stayed permanently after the relapse in 2018 although did slightly improve and the eye movements are not quite as strong unless i am very tired.
Prof G, thank you for revisiting this. Double vision used to be episodic but now quite constant. It’s certainly stopped me from driving. You had suggested using an eye patch. This works very well to use my dominant eye for watching screens of all kinds, where objects are moving, instead of canting my head back to tilt the eyes downward. (I’ve not tried driving with the eye patch!) I’m looking into prism glasses, though. Happy holidays to all! 💕
I've had double vision twice - anything further than a few cm away split in two. I managed to run London Marathon because I could see the person in front of me but no further. But the first time I had it I couldn't see my computer screen properly. Both times it resolved fairly quickly.
I found nystagmus (my 5th relapse) far worse, and it lasted a lot longer. Something I usually took for granted like crossing the road was suddenly terrifying. I couldn't judge how fast the vehicles were moving or where they even were.
I haven't seen an ophthalmologist since my second relapse, which was optic neuritis. I was already recovering well by then so turned down the only treatment offered - a steroid drug trial that would have been too disruptive to my (at the time) precarious employment.
My neurologist back home in Madrid said that some of his patients improved how well they could track moving objects such as cars driving by through eye motility exercises to strengthen, sort of like going to the gym but for your eyes. I am looking for an ofthalmologist in London where I live who might take a look and try to help.
I developed double vision in July of this year. I visited the optometrist who suggested that since my double vision was not stable throughout the day, prisms wouldn’t work. I was referred to a retina specialist. I completed my 3rd round of Lemtrada in August, after which the double vision has gone and many of my other MS symptoms have decreased. The retina specialist has completed an assessment which shows the damage from my optic neuritis in 2019 and plans to complete a yearly assessment to see if there is progression.
Hello, thanks for this and happy holidays. I have what I think is nystagmus, (have seen a number of unfamiliar terms including this one on clinical letters describing it), which I manage by using an occlusion patch on one lens of my glasses. I did ask the orthoptist whether I should worry that effectively covering one eye would weaken it – and they said confidently that it would make no difference at all. Your recommendation suggests otherwise - so confess I'm a bit confused ....
(I was preoccupied during the holidays and wish I could have responded earlier, someone rear-ended me in my car and totaled it- Yes, other inconvenient things will continue to happen when you have MS). I’ll start by adding that the example case person has my empathy and respect. What the Doctor describes sounds so terrifyingly familiar. Of all the symptoms I’ve experienced since 1988, tremor, especially in combination with nystagmus, was the most concerning- making me wonder whether I was falling apart beyond any repair. “Maybe this is it”, I thought. I’ve had double vision too at least twice, but don’t recall if the other stuff was with it. So this is to help anyone who might find it useful:
My tremoring combined with nystagmus after not fully resolved optic neuritis, affected me about 6 or so years in from onset. My MS doc (very good) and I had tried several things with no avail. I had already started interferon (which I continued for 22 years). So I described to him how alcohol seemed to alleviate those symptoms a bit temporarily, and he immediately said “I think I know what will work”. It was Clonazepam as Dr. G noted. After several months of these troubling symptoms, it was just fantastic! Just like you hope for with a pill, you took it, and the problem immediately went away!!! Now I know (here in The US) this is a controlled substance or the like, so don’t get carried away if you use it. But I had new hope, which was so important back then. I used it for a couple more years as needed, and gradually those symptoms resolved. I suppose I shake just a tiny little bit still, but I don’t notice it. My nystagmus is also resolved for the most part. It still takes me a bit longer for my focus to settle on things without moving around, but again, I usually don’t notice it. The neuritis has resolved completely (happened 3 times, different eyes separately).
A Temp Solution for Driving- Driving was one of the things affected most. Try driving while you can’t focus quickly, or notice things moving about you quickly, while your head is shaking about on your neck. I found that with putting up my auto head rest and constantly putting pressure backward with my head, I was able to drive good enough, and for long distances too. The other most helpful thing was knowing exactly where I was headed, know how many exits which I could count, etc. I don’t know if today I could have relied on a smart phone to tell me where to go. I had to know in advance what was coming. And yes, I’d take the Clonazepam as directed while driving, especially longer distances where I had not been there before.
I have had nystagmus and balance/double vision issues in the past. I now do regular vestibular eye workouts on MS Gym programme and havent had a recurrance so far.
lve had double vision - told i had some nystagmus. i have multiple eye diagnoses - on top of bilateral optic neuritis. i found trevor wickens ms gym eye exercises really helpful - very quick results - use them to top up if it comes back. just an easy idea!
I have an off topic question for you Prof -
Is it right that the dental reference system doesnt take into consideration how dental how infections affect the average pwms? It is right that they should not take into consideration that we cannot tolerate a dental infection even before there is " at least visible facial swelling" because of the neurological and relapse trigger effect?
To elaborate: i have quite bad neuro damage even though i am stable on tysabri. If i get an elevated temperature - anything past 37 degrees say due to infection, or get any slight infection/virus such as a tooth infection i become virtually unable to walk and i get bppv. I become unbearingly cognitively impaired.
How do I explain to other health professionals such as my dentist/nhs maxilo surgery provider that they can't treat me like a normal person? That if they do i literally wont be able to walk/talk/sleep/think?
How do you explain to people that your brain starts metaphorically boiling and your brain operating system goes blue screen?
Do they not have a higher duty of care for patients with chronic idleness?
What they call a non emergency- i.e. a small infection- is a very big deal to pwms.
I've been told (shouted at) today by the nhs surgery I was referred to by my dentist that basically im a queue jumping hypocondriac problem patient when i tried to ask the manager to please highly consider me on their cancellation list.
I work with an optometrist, daily exercises to make my eye's muscles work better, and also use prisms on my glasses
Despite this, and with a stable RM and no relapses, my headaches and nistagmus is getting worse. And my neurologist does not consider it completely related to my MS course, or he is not considering a change in the meds, currently on Cladribirine,
I'm becoming more and more disabled due to this and nobody is listening to me
I have shaky vision, generally in the distance, that has been called oscillopsia by my MS neurologist. It began with my very first MS lesion located in my brain stem (cerebellar peduncle) nearly 10 years ago. I have perfect distance vision, but now need reading glasses. If I wear one contact lens, or remove one lens from my reading glasses, I can use monovision (one eye for distance and one for reading) which instantly stops the oscillopsia. I assume it forces my eyes to act independently which stops the shaky vision. This is similar to patching, but much more attractive. It's not a permanent solution for me because my brain tends to resist monovision. My father was an ophthalmologist. He said that for unknown reasons about half of people adapt easily to monovision and the other half do not. Unfortunately I belong to the latter group. None-the-less, my monovision attempts still provide me with temporary relief from oscillopsia. Having a little control with this uncontrollable disease is appreciated.
I had jumpy vision a few years ago, after I had been diagnosed with SPMS.
I don't know which type of nystagmus it was, but I remember it caused nausea.
I didn't see an ophthalmologist about it, just my MS neurologist.
My dose of gabapentin was increased, and I found I had to cut back on some activities using my eyes. like reading and playing Sudoku puzzles. That seemed to take care of it, and it hasn't recurred.(I have resumed reading and my Sudoku addiction though.)
I have bouts of my vision rapidly jumping sideways to the left and back again, patterns sliding around and short episodes of ON. At night I often have large black jagged patches in my vision. I don't know if they are related or not.
I have an ocular flutter, is that the same as a micro square wave jerk? It makes it hard to track, read, and focus. 0.25 of Clonazepam at night seems to help. What is the difference between upbeat and downbeat nystagmus?
I developed ocillopsia in july 2018 when in relapse. I was watching a show with my son and felt very dizzy like i had vertigo. When i got home i asked my husband to look at my eyes as i felt so strange. He said it looked like i was looking out of a train window whilst it was moving. It turned out i have nystagmus when looking left or right (but particularly left), it is very much worse when i am fatigued. I was referred to an ophthalmologist who I saw October 2018 but no treatment offered as i was under neurology and they were going to be sorting a DMT. I had a vision test in march 2020 which was ok and i didnt need glasses by December 2020 my eyesight had deteriorated - i am still not sure why but i need glasses for driving now as i have double/blurred vision without wearing them. I was discharged by opthalmology after their inital assessment in 2018. I went onto Ocrevus in June 2019. I have regular eye tests as i find my vision worsening. Initially they tried me on gabapentin and then pregabalin but both medications worsened my fatigue and my nystagmus so i stopped taking them after a very short trial. My nystagmus stayed permanently after the relapse in 2018 although did slightly improve and the eye movements are not quite as strong unless i am very tired.
Prof G, thank you for revisiting this. Double vision used to be episodic but now quite constant. It’s certainly stopped me from driving. You had suggested using an eye patch. This works very well to use my dominant eye for watching screens of all kinds, where objects are moving, instead of canting my head back to tilt the eyes downward. (I’ve not tried driving with the eye patch!) I’m looking into prism glasses, though. Happy holidays to all! 💕
I've had double vision twice - anything further than a few cm away split in two. I managed to run London Marathon because I could see the person in front of me but no further. But the first time I had it I couldn't see my computer screen properly. Both times it resolved fairly quickly.
I found nystagmus (my 5th relapse) far worse, and it lasted a lot longer. Something I usually took for granted like crossing the road was suddenly terrifying. I couldn't judge how fast the vehicles were moving or where they even were.
I haven't seen an ophthalmologist since my second relapse, which was optic neuritis. I was already recovering well by then so turned down the only treatment offered - a steroid drug trial that would have been too disruptive to my (at the time) precarious employment.
My neurologist back home in Madrid said that some of his patients improved how well they could track moving objects such as cars driving by through eye motility exercises to strengthen, sort of like going to the gym but for your eyes. I am looking for an ofthalmologist in London where I live who might take a look and try to help.
I developed double vision in July of this year. I visited the optometrist who suggested that since my double vision was not stable throughout the day, prisms wouldn’t work. I was referred to a retina specialist. I completed my 3rd round of Lemtrada in August, after which the double vision has gone and many of my other MS symptoms have decreased. The retina specialist has completed an assessment which shows the damage from my optic neuritis in 2019 and plans to complete a yearly assessment to see if there is progression.
Hello, thanks for this and happy holidays. I have what I think is nystagmus, (have seen a number of unfamiliar terms including this one on clinical letters describing it), which I manage by using an occlusion patch on one lens of my glasses. I did ask the orthoptist whether I should worry that effectively covering one eye would weaken it – and they said confidently that it would make no difference at all. Your recommendation suggests otherwise - so confess I'm a bit confused ....
I have double vision, at distance, right eye. Saw opthalmologist at onset. No treatment. 5 years later, still have it but brain copes.
(I was preoccupied during the holidays and wish I could have responded earlier, someone rear-ended me in my car and totaled it- Yes, other inconvenient things will continue to happen when you have MS). I’ll start by adding that the example case person has my empathy and respect. What the Doctor describes sounds so terrifyingly familiar. Of all the symptoms I’ve experienced since 1988, tremor, especially in combination with nystagmus, was the most concerning- making me wonder whether I was falling apart beyond any repair. “Maybe this is it”, I thought. I’ve had double vision too at least twice, but don’t recall if the other stuff was with it. So this is to help anyone who might find it useful:
My tremoring combined with nystagmus after not fully resolved optic neuritis, affected me about 6 or so years in from onset. My MS doc (very good) and I had tried several things with no avail. I had already started interferon (which I continued for 22 years). So I described to him how alcohol seemed to alleviate those symptoms a bit temporarily, and he immediately said “I think I know what will work”. It was Clonazepam as Dr. G noted. After several months of these troubling symptoms, it was just fantastic! Just like you hope for with a pill, you took it, and the problem immediately went away!!! Now I know (here in The US) this is a controlled substance or the like, so don’t get carried away if you use it. But I had new hope, which was so important back then. I used it for a couple more years as needed, and gradually those symptoms resolved. I suppose I shake just a tiny little bit still, but I don’t notice it. My nystagmus is also resolved for the most part. It still takes me a bit longer for my focus to settle on things without moving around, but again, I usually don’t notice it. The neuritis has resolved completely (happened 3 times, different eyes separately).
A Temp Solution for Driving- Driving was one of the things affected most. Try driving while you can’t focus quickly, or notice things moving about you quickly, while your head is shaking about on your neck. I found that with putting up my auto head rest and constantly putting pressure backward with my head, I was able to drive good enough, and for long distances too. The other most helpful thing was knowing exactly where I was headed, know how many exits which I could count, etc. I don’t know if today I could have relied on a smart phone to tell me where to go. I had to know in advance what was coming. And yes, I’d take the Clonazepam as directed while driving, especially longer distances where I had not been there before.
Very tough symptoms. Good luck everyone :-)
I have had nystagmus and balance/double vision issues in the past. I now do regular vestibular eye workouts on MS Gym programme and havent had a recurrance so far.