Could Your Eyes Be Warning You? Vision Changes, Optic Neuritis, and Neurological Conditions Explained

Could your eyes be trying to tell you something about your brain?

Many people associate neurological diseases with symptoms like weakness, numbness, fatigue, or balance problems.

But for many—including Michele Weston—vision changes are one of the earliest warning signs.

In this eye-opening solo episode of Beyond My Diagnosis, Michele shares her personal experience with optic neuritis, the symptom that ultimately led to her multiple sclerosis diagnosis more than 25 years ago.

She explains why sudden vision changes should never be ignored and explores how the eyes often provide some of the earliest clues that something may be happening within the nervous system.

This episode isn't intended to create fear.

It's designed to help you become a more informed and empowered advocate for your own health.

Because information is power.

In This Episode You'll Learn

• Why vision changes can be early signs of neurological disease
• What optic neuritis is and why it's often associated with multiple sclerosis
• Symptoms that should never be ignored
• How inflammation affects the optic nerve
• The connection between heat and neurological vision symptoms
• Why MS isn't the only neurological condition that affects vision
• Conditions including neuromyelitis optica (NMO), Parkinson's disease, stroke, migraines with aura, idiopathic intracranial hypertension (IIH), brain tumors, and giant cell arteritis
• When to seek immediate medical attention
• How to advocate for yourself if symptoms don't seem right

Common Vision Symptoms Michele Discusses

Vision changes don't always mean you need a stronger eyeglass prescription.

Sometimes they can be your nervous system asking for help.

Symptoms may include:

• Blurred vision
• Eye pain, especially with eye movement
• Double vision
• Temporary vision loss
• Loss of color vision
• Blind spots
• Floaters
• Difficulty focusing
• Eyes that don't seem to work together
• Involuntary eye movements (nystagmus)
• Episodes where vision becomes unusually dark—or unusually bright

Because nearly half of the brain is involved in processing vision, neurological conditions frequently affect how we see.

What Is Optic Neuritis?

Optic neuritis is inflammation of the optic nerve—the pathway that carries visual information from your eyes to your brain.

It's one of the most recognized neurological eye conditions and is commonly associated with multiple sclerosis, although it can also occur with neuromyelitis optica (NMO), lupus, infections, and other autoimmune diseases.

Common symptoms include:

• Pain when moving the eye
• Blurred vision
• Faded or dim colors
• Blind spots
• Temporary vision loss (often in one eye)

Many people recover much or most of their vision, although some changes may remain.

Heat and Vision Changes

Because this episode was inspired by the extreme summer heat, Michele also explains why rising body temperature can temporarily worsen neurological symptoms.

She shares practical tips to help reduce heat-related flare-ups, including:

• Wearing a hat outdoors
• Using cooling neck wraps or cooling vests
• Drinking cold beverages
• Avoiding prolonged heat exposure
• Paying attention to how your body responds when moving between hot and cold environments

For people living with MS and other neurological or autoimmune conditions, these small strategies can make a meaningful difference during the summer months.

Michele's Story

Michele reflects on the fear she experienced when optic neuritis first affected her vision and shares the importance of finding specialists who truly listen.

She recounts her experience with neuro-ophthalmologist Dr. Kupersmith, whose compassion and commitment to urgent patient care reinforced just how important it is to take unexplained vision changes seriously.

Her message is clear:

Don't ignore your symptoms.

Be curious.

Ask questions.

Seek second opinions when something doesn't feel right.

You are an essential member of your healthcare team.

Michele's Closing Message

Our diagnosis may shape our lives.

But it never defines our potential.

There is still joy to experience.

Purpose to pursue.

And a future worth planning for.

Living with a chronic illness isn't just about managing symptoms.

It's about managing your life.

🔗 Resources Mentioned

National Multiple Sclerosis Society
https://www.nationalmssociety.org/

American Academy of Ophthalmology
https://www.aao.org/

National Eye Institute
https://www.nei.nih.gov/

American Academy of Neurology
https://www.aan.com/

National Institute of Neurological Disorders and Stroke
https://www.ninds.nih.gov/

Transcript

Speaker 0:05

Hello, this is Michele Weston, and I wanted to talk to you about something with all of this heat that is gosh-darn heat across the country, not just here in New York, but around the world right now. Um your eyes. Your eyes are a big deal about, you know, connecting to your neurological system. And I know that unfortunately, one of the first symptoms that I experienced 25 years ago when I developed MS was optic neuritis, which is almost a fracturing of your vision. Sometimes it can make one eye blind. Sometimes it goes away, and for some people, God forbid, it stays. But these are things that in the heat, how neurological symptoms can affect our bodies with neurological conditions is a big conversation. So let's talk about a little bit of that today. Um, because I want everyone to sort of benefit from that. So when we think about neurological diseases, we often think about symptoms like weakness and numbness, uh, balance problems, or definitely neurofatigue. But one of the earliest signs for many people, like me, can actually be changes in your vision. Now, that's I'm not saying this to scare you, I'm scaring this to educate you. And many of you have already experienced it, so you know what I'm talking about. For some, it starts with blurry vision. Others notice um double vision, they uh experience symptoms like eye pain, involuntary eye movements. Uh, what else can I think about? Or even, God forbid, again, temporary vision loss. And these symptoms are easy to dismiss as needing to go to the eye doctor. And that's not really what's going on. It's not a new eyeglass prescription, stress, although stress is not good for your neurological conditions. Um, it's not even about simply being tired, but sometimes they're your nervous system's first way of asking for help. And because nearly half of the brain is involved in processing vision, so can you imagine half of your brain is busy processing how you see? It's not surprising that many neurological conditions can affect the eyes, because vision changes can be an early clue to many neurological conditions. So many people living with neurological conditions or vision changes are one of the first symptoms that we sort of seek medical conditions. And just to go over those again, the symptoms can include blurred vision, uh, eye pain, especially when moving your eyes, um, loss of color vision, blind spots was I've experienced double vision, eye twitching, uncontrolled eye movements, oh, floaters. Oh gosh, floaters are just bizarre, difficulty focusing, and it feels like your eyes aren't working together. And there can even be episodes where vision becomes unusually dark or unusually bright, so it could go the other way. And these symptoms don't just affect what you see, they can affect and impact your balance, being able to drive, reading, working, and overall independence. And we've talked about how important that is. And by the way, it's not just multiple sclerosis. While vision problems are very common in people living with MS, like me, there is always seen in many other neurological conditions. So let's talk about this. With MS, inflammation in the body, inflammation in the neurological paths, can damage the optic nerve and the pathways that control eye movement or lead to optic neuritis, double vision, blurred vision, or involuntary eye movements. There's also something, another condition called neuromyelitis optica, NMO. Now, this is a rare autoimmune disease, and it also commonly causes optic neuritis, often resulting in more unfortunately severe vision loss than MS, because treatment is different. Getting the correct diagnosis is incredibly important. Those of us with neurological diseases understand how sometimes we have to go through many um steps to get the right diagnosis. Uh, somebody may say it's this, somebody may say it's that. We need to keep persevering, we need to keep being our own advocates. And if it doesn't feel right, if it doesn't what you're taking, or that another symptom shows up, or that it continues, always get a second opinion. And there's eye doctors that specialize in neurological conditions like these. We also have to include strokes, because depending on where the stroke occurs, people may lose part of their vision and they may develop double vision or have difficulty processing what they're seeing. Uh, another condition, Parkinson's disease. With Parkinson's, people may experience dry eye. Um, they have reduced blinking. They sort of sort of look at them and they're almost staring, but it's just reduced blinking. They may have trouble focusing their eyes and difficulty tracking moving objects. So definitely important to know that because you wouldn't want somebody with Parkinson's struggling to think that driving is going to be the same as how it was before you were diagnosed. And that's an important piece of the puzzle. There's also idiopathic intracranial hypertension, and again, it has initials like MS does. This is IIH, and it's also known as pseudotumor cerebri. It is increased pressure around the brain, the entire brain, that can cause swelling of that optic nerve. And it leads to temporary vision blackouts, blurred vision, or permanent vision loss if left untreated. Brain tumors fall under this. Tumors pressing on that optic nerve or the visual pathways in your brain can cause blind spots, can cause double vision, or changes in peripheral vision. There's giant, well, temporal, so giant cells, temporal arthritis. Um it's an inflammatory condition that can suddenly reduce the blood flow to the optic nerve and may cause permanent vision loss if not treated quickly. It most often affects people that are over the age of 50. Of course, my sister lives with this make migraines, migraines with auras. Not all vision problems come from the eyes themselves. Some people experience flushing lights, zigzag lines, blind spots, or temporary vision changes before a migraine headache begins. So we've talked about a number of conditions, and I wanted to go back and talk about what they are. So optic neuritis is the most recognized neurological eye condition because it's inflammation of the optic nerve. It's that cable that carries visual information from your eyes to your brain. So what you see translates to your brain, goes up there and goes, Oh, I'm seeing something. What is it? And symptoms often include the following again. So it's always good to have a list. No, you don't have to have all of these. You could have one, you could have two. And these we're not covering this to scare you, we're covering this to educate around the world what we're looking at. Because as I always say, information is power. And it takes a village to help ourselves and to advocate for ourselves and to keep pushing. So some of the symptoms of optic arritis is there's pain when moving the eye, there's blurred vision, there's dim or faded colors, blind spots, temporary vision loss, which usually is in one eye. Mine was in my left. I don't know where any of you who are recalling when this happened to you or having this happen now. An optic neuritis is commonly, which is why I talk about it at nauseum at times, associated with MS, but it can occur with NMO, it can occur with infections, it can occur with lupus and other autoimmune conditions. And many people recover some or most of their vision over time, although some changes may remain. So that eye shape, that eye shape, honestly, the smoothness of it can change. I know that sounds very odd, but definitely have a conversation with your eye neurosurgeon, eye doctor who's specializing in that. Um when eye movements changes matters, okay? The brain controls every movement of our eyes. So when neurological disease affects those pathways, symptoms may also include double vision, may have eyes that drift out of alignment, may have more rapid involuntary eye movements called nystagmus. You may have difficulty focusing, you may have dizziness or nausea that's caused by that unstable vision. And these symptoms can significantly affect balance and increase the risk of falls. So don't ignore vision changes because sudden or unexplained vision changes could never, should never, ever be ignored. While some eye symptoms are harmless, others can be first signs of a neurological condition that requires evaluation as quickly as possible. So if you're experiencing things like sudden vision loss or double vision or eye pain or blind spots that are new, or persistent blur vision, or drooping of an eyelid is another one. It's important to seek medical attention right away. And our eyes often provide some of the earliest clues that something is happening within the nervous system, whether it's multiple sclerosis, myasthenia gravis, uh, stroke, Parkinson's disease, uh migraines or other neurological disorders. Paying attention to these changes can lead to earlier diagnosis and treatment. As always, I want you to remember this podcast is intended to help educate you, to empower you, not diagnose you. I am a health and wellness coach that's certified in that. I work as a board certified patient advocate. But if you're experiencing these new or worsening vision symptoms, talk to your health care provider or providers, or seek care to see what's going on with your brain. Because sometimes those smallest symptoms can be the biggest clues. And I wanted to talk about this because I want your this audience to really think about what happens. Don't get bogged down in all the minutiae. Just think about what happens to our bodies and how incredibly amazing it is. I can remember meeting uh Dr. Cooper Smith. Uh my neurologist has sent me to Dr. Cooper Smith. And Dr. Mark Cooper Smith here in New York is one of the legends around the world, uh, honestly. It's not just because he's my doctor that I'm saying that, but he's well respected. He does a lot, a lot of uh research, which is so important to us. We really, really need more and more and more research. And I loved meeting him. I didn't love meeting him the first time I saw him because I had optic neuritis, which was very scary. Um, but he's such amazingly, he's such an empath. And he's been in a lot of the top hospitals here in New York. He sort of switches because sometimes um he can get better grants and he can work in different departments and he can expand and explore things he's wanted to expand and explore, which I really appreciate myself. Um, Dr. Cooper Smith, I remember, I think second year I saw him. Um, at the beginning, I had a lot of octodhritis and eye issues. And I remember being called by one of his um medical team, the reception area, and they called me, they said, Michele, we have to cancel your appointment. And I know this was like a six-month follow-up, but I said, Oh, I can't believe this. I'm still having issues, and that's really upsetting. But the way that he is, Dr. Cooper Smith, and I hope that you've experienced this with your doctors, Joni told me his uh head medical reception secretary said to me, somebody went blind this morning, and he's addressing that. Wow. Somebody went blind this morning. Can you imagine going blind? And you have to do a double take. You have to say, well, my issues are really important, but wow, I have a doctor that really, really cares so much that he will switch gears and run towards what he needs to run towards, which I really, really honor and appreciate. I think it's really important to have doctors like that around you because they show you how this sudden or unexplained vision shouldn't be ignored. And imagine having somebody who can explain to you why I am seeing things um in a different way. Why am I experiencing dark spots in my vision on the sides? These are things that not just the eye doctor that you go to for your um prescriptions for your eyeglasses. And I've worn eyeglasses since I'm seven, so over 50, I've been at the eye doctors a lot. This is another level, another area of eye conditions and eye disease that they specialize in. And there's people around the world, around the country. On that note, I want you to think about what goes on with your symptoms. But I wanted to go to this one because heat is a big inflammatory marker, inflammatory setup for um developing eye conditions that you may not have all year, but you seem to develop during the summer. So look out for them. Make sure you're wearing a hat. Make sure that you're wearing a cooling uh neck scarf or a cooling vest to keep yourself as cool and as calm and as centered as you can. Um make sure that you're also seeing what the weather's like. If it's really hot and you're going from uh doing different things, whether it's from appointments or working, you're going from different buildings or different places because you visit different offices and so forth. Uh I want you to think about what happens when you go from hot to cold. I want you to think about am I in the heat too long? You know, this whole neurological condition and this inflammation of our neurological system is so delicate. It can infect people's bowels, it can infect people's bladders. So heat is a big marker for all of us. And I want you to think about that because you may not have. Those of us who have experienced it have a little more um urgency now knowing or having it happen to them the first time. So we have a tendency to look and say, what's going on with my eyes? What's going on with my body? Be your own agent, be your own helper in diagnosing what's going on because patients have a job. And I'm not kidding, we have a job. You are the driver of the ship. You have lots of help. You have the coach, you have the lead person, normally your neurologist, whatever specialist that is. But I want you to really, really think about what I can do to help myself when I have these hot conditions. And I'm talking about um the summer here in the Northeast. So there are people in the south, there are people in different islands, different countries that experience more heat than we do here constantly. Um, I thank God that we have different seasons. I like that we have spring, summer, fall, winter. I like the changes of the seasons. I don't know, because I think, you know, I've always liked the changes of leaves and I love what goes on with flowers and so forth. But I also love the way the heat feels when it's colder, when it's hotter, the heat feels when it's hotter, or when it gets cold, you blow out and there's frost. And I I appreciate that. But those suffering with a chronic neurological condition can be living with that heat really causing friction there. Um, even I talked about getting a um uh a scarf for your neck put in cold packs. There's now these tubes that are really cool that I got off of Amazon. Um, I think there's a couple of different kinds, but they stay hot for a couple of hours. I mean, did you just hear me say that? They stay cold for a couple of hours. And that's something you should look into if cooling down your neck will affect how your brain is is cooling down, how your inflammation is going down. So think about those things. Uh, you may want cooler drinks, definitely. You want, if you if you tolerate it well, ice in your drinks to help your body regulate itself. This goes for autoimmune conditions too. I mentioned lupus, uh, I mentioned, you know, things like strokes and so forth. The body is so amazing, and we've got to help ourselves help our bodies. And I hope that you can appreciate what that's like when you're thinking about things, because I I know that it's it's been so important to me that I know how to think about um handling things and looking at aging and you know you you you you're you're so focused on every day, and then you get by that, and then it gets a little easier, but there are certain things that are always showing up, and I want you to be able to say to yourself, you know what, I know it, and this is what's going on. And I want you to really take the time because a closing thought our diagnosis may shape our lives, but it doesn't define our potential. Be resilient, be tenacious, because there is still so much joy to experience. There's a purpose to pursue things, to keep going, and it's a future worth planning for. And honestly, science is finally catching up to what patients have known us for years. Living with a chronic illness isn't just about managing the symptoms, it's about managing your life. And I want you to have the best life you possibly can and understand there's a message out there that it's so important to share. Our diagnosis is very much more than beyond my diagnosis. It goes on to a whole nother level. And that's what I hope this podcast helps you think about where I can go in the future, how do I move forward? And I'm here to help you, and I'm hopeful to give you ideas and things to think about. I wish you well and I'll catch you on the next podcast. And thanks for tuning in today, and have a good day. Thanks for tuning in to this episode of Beyond the Diagnosis. If something we talked about today resonated with you, if you're craving deeper understanding, better support, or just want to know you're not alone on this journey, make sure to subscribe to my free substack at micheleweston.substack.com. M-I-C-H-E-L-E, W-E-S T-O-N.substack.com. That's where I share personal insights, expert takeaways, and extra resources to help you stay informed, empowered, and one step closer to the clarity you deserve. And if you found this episode helpful, leave a review or share it with someone who needs to hear it. Your voice helps this message go further. Until next time, keep asking questions, keep trusting yourself, and keep going beyond the diagnosis.