I have had to stop driving at night as I need help knowing how close I am to stop signs and traffic lights. Is there anything to help with these symptoms that I find quite disabling?
thank you for bringing awareness to this. I find being a passenger also disorientating on long night journeys .I had ON 23 years ago, an early symptom with balance and vertigo problems. I stopped driving in the dark at night about 15 years ago. I have one route, its about a mile that is lit well enough without being like flood lights, it is in to our local town. i'll do this as I know it well enough. This means my husband can enjoy a drink.
I find going to different light strengths really difficult, and can't walk without another person in the dark, my balance goes. in my bedroom I have battery operated sensor lights and use the wall to get to the ensuite loo.
At some point I'm sure we will have to move nearer a town. living rurally it can be isolating with these limitations. I'm already down to yearly review on my driving licence.
I no longer drive at night. It feels like driving in a video game. I haven’t driven at night for 15 years+ because of this weird phenomenon. I live in an area where I cannot find a serious ophthalmologist. I know I have nystagmus which I have assumed makes using computers and screens extremely difficult now. This alternates with diplopia. Have had one bout of ON. I have lost peripheral vision on left. I can putter around my neighborhood but that’s it. During the day, if I start out and I see two traffic signals or signs, I turn around and go back home. (I have tried an eyepatch.) I will ask my neurologist re the fampridine. This is hopeful information. I am fairly depressed at losing more independence.
very likely, your neuro is going to tell you to give it a try. I used until recently to take Fampyra twice a day. it helps me with walking, but it's a trade-off: a strange dizziness, not exactly severely disabling, but... for me it's not worth. let's hope it works better for you.
Hmm. I wonder if that is a usual side effect. If it helps with my eyes, I’d be willing to try it. But I understand about not wanting the dizziness. That and vertigo are the most disabling symptoms (to me). Any type of dizziness is hard to work around.
profG says somewhere above that very likely Fampyra has its impact on visual mechanisms, although it isn't marketed for them. based on my experience, this (beneficial) impact is real. I'm not sure whether my bouts of dizziness were caused by Fampyra or baclofen or something else. they disappeared once I stopped taking them.
sounds boring and somewhat primitive, but regarding spasticity I try to exercise as much as possible. I doubt neuroplasticity works according to my wishes, but I don't have a better option.
My autonomy is about 1 km, max 1.5 km, on even ground (asphalt). I try to accept these are the real coordinates.
It’s not boring; it’s difficult to tease out what causes what. Many years ago, baclofen was all I needed. No side effects. Then, after years, it caused speech problems. I have a level of dizziness that is generally present, but waxes and wanes. My walking is roughly the same as yours, but balance and vertigo are a challenge. Sleep too. I get tired of medications! I appreciate your sharing your knowledge.🌷
I find this fascinating. I was born blind in my left eye, so I have never seen with two eyes. My depth perception sucks, and I can't see 3D, but my brain must have always compensated as I have been able to drive and do all the things. Oh, except be a pilot lol. That was what I was told as a child, I could never pursue that profession. At 56, I find that all my peers hate driving at night and a couple just won't drive at night. I wonder if as we age, we all have night driving concerns. That being said, I can see at how age 22 how this would be quite concerning. I hope the questioner is able to try the medication Dr. G mentioned and get some relief.
My first symptom was revealed at a football match when I could not follow the ball from left to right. Prism prescription in glasses helped with that. It took though 17 years after that to diagnose PPMS, 2 neuros, 2 ophthalmic consultants to get a diagnosis. There was no chance of me ever getting early DMT treatment and I’m seriously affected. You mention Fampridine which is a drug that can hep me with my walking and balance and eye. However as usual it’s a postcode and area lottery. If you are in Wales you will get it. I’m in England so have been left to just decline more and more. The private cost of Fampridine is £4700 per patient per year. What makes this more upsetting is that the manufacturer will fund the first four weeks of treatment, so that responders can be identified and treatment continued in only these patients. Following this, the NHS is responsible for funding treatment.
Although this post is about ON and driving at night, I’d like to thank you for sharing the two videos (that you previously shared on Bart’s MS Blog)
As I commented before I find it very useful to share them with others to give them a real appreciation of what PwMS contend with and why my capacity to do things is limited and can constantly turn on a sixpence.
I will also now be referencing your accompanying paragraph about imagining this in someone’s brain - again being directly able to quote a professional carries more weight.
I’m assuming the red/orange colour is showing the amount of energy being used by the electric impulse.
Yes, the red/orange is an integration of the number of ions that need to be pumped out (Na*) of and in (K+) to the nerve fibre to get it ready to conduct the next impulse. It is a visual illustration of how much energy it takes to conduct an impulse down a demyelinated axon.
Can you help explain this. My right eye is blurry up close to things and it’s being dismissed as Ms. Optic nerve VPN testing doesn’t show anything, visual field seems fine etc, MRI didn’t show anything. Eye pressure is the top end of normal.
I am convinced it’s my ms, why else would my eye sight be crystal clear only 12 weeks ago and now blurry. What would you suggest ?
I agree this doesn't sound like MS. You will need to be examined by an ophthalmologist to exclude several possibilities. You may have a problem with accommodation which is a reflex that controls bringing the eyes together for very near vision. This can be due to MS. Again to examine the accommodation reflex you need to see a doctor.
I've had foggy vision, especially when it's hot, but fortunatelly no depth percepcion problems. When I have fever, my vision is like thermometer, when everything is blurry then I know it's past 38.5 degrees Celsius
I've been taking 4-AP for maybe 25 years, roughly 70 - 90 mg/day. It improves nerve conduction, and improves all symptoms. It enabled me to continue working until a few years ago. Worth it for me.
As a pwMS, whose mother and 2 sisters also had/have MS, I still read everything I come across about MS. I’ve taken several of the drugs mentioned in this article. I’ve taken some hard falls that I realized could been fatal. I’ve given thought to suicide. I will press on.
Oct 27, 2023·edited Oct 27, 2023Liked by Gavin Giovannoni
Issues with ‘Depth perception’ makes sense to me. To my knowledge I’ve not experienced optic neuritis, though have experienced nystagmus. I often misjudge steps going up, in terms of how high to lift my foot, so I trip, I’m not sure if it’s wonky depth perception or foot drop which sets in after 20mins or so continuous exercise /walking
It sounds like you may have problems with depth perception as a result of proprioceptive or joint position malfunction. If this is the case you need good vision and depth perception to compensate. Obviously a dropped foot and weakness will make the problem worse. Please be careful. You want to avoid falling and sustaining a fracture.
I had nystagmus too, it was my most disabling relapse and made just crossing the road terrifying.
I often trip over my right foot especially when running. Last night I was training in the dark and realised it almost works better for me as I naturally pick my foot up more when I can't see the ground!
I have had optic neuritis too and the lasting effect seems to be light sensitivity in that eye.
I have managed to retain my driver's license but I don't drive. I do cycle though and I don't think my depth perception at night has been affected.
Thank you so much for this. It's really hard to explain to people why my vision varies so much and why exercise and heat makes me feel like I'm losing my sight. Clear explanations of the causes of symptoms are so valuable and make life less exhausting. Is there a way to bookmark and share this? I am a substack member but it's difficult trying to navigate it with patchy uncoordinated vision. Or maybe you could collect these symptom related posts together and publish a book? Trying to explain MS is very tiring!
Can we have some more information on this, particularly the increased heart attack and stroke- which infections increase our risk with having MS and is it just ms or is it from being on high efficacy DMD’s?
TB is now becoming more prevalent around the world especially in urban areas. She recommends screening for latent TB using IGRA/quantiferon test, followed by a CXR if this is positive. If the investigations suggest latent TB infection then DMTs can be commenced after treating for TB at least one month. Whilst with active TB infection she suggests different strategies:
The risk of herpes infections increases with higher efficacy treatments leading to neuropathic pain, eye infection and visual loss and disseminated herpes with meningitis, lung inflammation and hepatitis. She also warns of the 1.3-4x increase in heart attacks and strokes 3months after infection as a result of blood vessel wall inflammation:
Although I am in a wheelchair, my doctor has prescribed the compound form (c-aminopyridine) for overall strength. I find it also helps with alertness.
thank you for bringing awareness to this. I find being a passenger also disorientating on long night journeys .I had ON 23 years ago, an early symptom with balance and vertigo problems. I stopped driving in the dark at night about 15 years ago. I have one route, its about a mile that is lit well enough without being like flood lights, it is in to our local town. i'll do this as I know it well enough. This means my husband can enjoy a drink.
I find going to different light strengths really difficult, and can't walk without another person in the dark, my balance goes. in my bedroom I have battery operated sensor lights and use the wall to get to the ensuite loo.
At some point I'm sure we will have to move nearer a town. living rurally it can be isolating with these limitations. I'm already down to yearly review on my driving licence.
Helen, Same here. I have had some near misses in low light. I use the rollater at night. Vertigo and instability in low light is dangerous. 🌷
I no longer drive at night. It feels like driving in a video game. I haven’t driven at night for 15 years+ because of this weird phenomenon. I live in an area where I cannot find a serious ophthalmologist. I know I have nystagmus which I have assumed makes using computers and screens extremely difficult now. This alternates with diplopia. Have had one bout of ON. I have lost peripheral vision on left. I can putter around my neighborhood but that’s it. During the day, if I start out and I see two traffic signals or signs, I turn around and go back home. (I have tried an eyepatch.) I will ask my neurologist re the fampridine. This is hopeful information. I am fairly depressed at losing more independence.
very likely, your neuro is going to tell you to give it a try. I used until recently to take Fampyra twice a day. it helps me with walking, but it's a trade-off: a strange dizziness, not exactly severely disabling, but... for me it's not worth. let's hope it works better for you.
Hmm. I wonder if that is a usual side effect. If it helps with my eyes, I’d be willing to try it. But I understand about not wanting the dizziness. That and vertigo are the most disabling symptoms (to me). Any type of dizziness is hard to work around.
profG says somewhere above that very likely Fampyra has its impact on visual mechanisms, although it isn't marketed for them. based on my experience, this (beneficial) impact is real. I'm not sure whether my bouts of dizziness were caused by Fampyra or baclofen or something else. they disappeared once I stopped taking them.
sounds boring and somewhat primitive, but regarding spasticity I try to exercise as much as possible. I doubt neuroplasticity works according to my wishes, but I don't have a better option.
My autonomy is about 1 km, max 1.5 km, on even ground (asphalt). I try to accept these are the real coordinates.
It’s not boring; it’s difficult to tease out what causes what. Many years ago, baclofen was all I needed. No side effects. Then, after years, it caused speech problems. I have a level of dizziness that is generally present, but waxes and wanes. My walking is roughly the same as yours, but balance and vertigo are a challenge. Sleep too. I get tired of medications! I appreciate your sharing your knowledge.🌷
I find this fascinating. I was born blind in my left eye, so I have never seen with two eyes. My depth perception sucks, and I can't see 3D, but my brain must have always compensated as I have been able to drive and do all the things. Oh, except be a pilot lol. That was what I was told as a child, I could never pursue that profession. At 56, I find that all my peers hate driving at night and a couple just won't drive at night. I wonder if as we age, we all have night driving concerns. That being said, I can see at how age 22 how this would be quite concerning. I hope the questioner is able to try the medication Dr. G mentioned and get some relief.
My first symptom was revealed at a football match when I could not follow the ball from left to right. Prism prescription in glasses helped with that. It took though 17 years after that to diagnose PPMS, 2 neuros, 2 ophthalmic consultants to get a diagnosis. There was no chance of me ever getting early DMT treatment and I’m seriously affected. You mention Fampridine which is a drug that can hep me with my walking and balance and eye. However as usual it’s a postcode and area lottery. If you are in Wales you will get it. I’m in England so have been left to just decline more and more. The private cost of Fampridine is £4700 per patient per year. What makes this more upsetting is that the manufacturer will fund the first four weeks of treatment, so that responders can be identified and treatment continued in only these patients. Following this, the NHS is responsible for funding treatment.
Although this post is about ON and driving at night, I’d like to thank you for sharing the two videos (that you previously shared on Bart’s MS Blog)
As I commented before I find it very useful to share them with others to give them a real appreciation of what PwMS contend with and why my capacity to do things is limited and can constantly turn on a sixpence.
I will also now be referencing your accompanying paragraph about imagining this in someone’s brain - again being directly able to quote a professional carries more weight.
I’m assuming the red/orange colour is showing the amount of energy being used by the electric impulse.
Yes, the red/orange is an integration of the number of ions that need to be pumped out (Na*) of and in (K+) to the nerve fibre to get it ready to conduct the next impulse. It is a visual illustration of how much energy it takes to conduct an impulse down a demyelinated axon.
Hi Gavin,
Can you help explain this. My right eye is blurry up close to things and it’s being dismissed as Ms. Optic nerve VPN testing doesn’t show anything, visual field seems fine etc, MRI didn’t show anything. Eye pressure is the top end of normal.
I am convinced it’s my ms, why else would my eye sight be crystal clear only 12 weeks ago and now blurry. What would you suggest ?
(As a paid subscriber)
I agree this doesn't sound like MS. You will need to be examined by an ophthalmologist to exclude several possibilities. You may have a problem with accommodation which is a reflex that controls bringing the eyes together for very near vision. This can be due to MS. Again to examine the accommodation reflex you need to see a doctor.
I've had foggy vision, especially when it's hot, but fortunatelly no depth percepcion problems. When I have fever, my vision is like thermometer, when everything is blurry then I know it's past 38.5 degrees Celsius
I've been taking 4-AP for maybe 25 years, roughly 70 - 90 mg/day. It improves nerve conduction, and improves all symptoms. It enabled me to continue working until a few years ago. Worth it for me.
Thank you. Yes I experience reduced sight when driving in dark conditions. This is a very useful explanation of this issue.
As a pwMS, whose mother and 2 sisters also had/have MS, I still read everything I come across about MS. I’ve taken several of the drugs mentioned in this article. I’ve taken some hard falls that I realized could been fatal. I’ve given thought to suicide. I will press on.
Issues with ‘Depth perception’ makes sense to me. To my knowledge I’ve not experienced optic neuritis, though have experienced nystagmus. I often misjudge steps going up, in terms of how high to lift my foot, so I trip, I’m not sure if it’s wonky depth perception or foot drop which sets in after 20mins or so continuous exercise /walking
It sounds like you may have problems with depth perception as a result of proprioceptive or joint position malfunction. If this is the case you need good vision and depth perception to compensate. Obviously a dropped foot and weakness will make the problem worse. Please be careful. You want to avoid falling and sustaining a fracture.
I had nystagmus too, it was my most disabling relapse and made just crossing the road terrifying.
I often trip over my right foot especially when running. Last night I was training in the dark and realised it almost works better for me as I naturally pick my foot up more when I can't see the ground!
I have had optic neuritis too and the lasting effect seems to be light sensitivity in that eye.
I have managed to retain my driver's license but I don't drive. I do cycle though and I don't think my depth perception at night has been affected.
Thank you so much for this. It's really hard to explain to people why my vision varies so much and why exercise and heat makes me feel like I'm losing my sight. Clear explanations of the causes of symptoms are so valuable and make life less exhausting. Is there a way to bookmark and share this? I am a substack member but it's difficult trying to navigate it with patchy uncoordinated vision. Or maybe you could collect these symptom related posts together and publish a book? Trying to explain MS is very tiring!
Hi Gavin.
Can we have some more information on this, particularly the increased heart attack and stroke- which infections increase our risk with having MS and is it just ms or is it from being on high efficacy DMD’s?
TB is now becoming more prevalent around the world especially in urban areas. She recommends screening for latent TB using IGRA/quantiferon test, followed by a CXR if this is positive. If the investigations suggest latent TB infection then DMTs can be commenced after treating for TB at least one month. Whilst with active TB infection she suggests different strategies:
The risk of herpes infections increases with higher efficacy treatments leading to neuropathic pain, eye infection and visual loss and disseminated herpes with meningitis, lung inflammation and hepatitis. She also warns of the 1.3-4x increase in heart attacks and strokes 3months after infection as a result of blood vessel wall inflammation: