Classic Nystagmus Caught on Video

Hi Gang,
I received a pm from Firegoddess and decided to chime in here.

I watched my husband's eyes physically twitch from a few inches away from his face. He was looking to the side, which is usually when a physician would elicit this on exam. This is classic nystagmus.

I'm pasting a video below. DON'T click on the link if you find such things disturbing or unsettling. I'm only linking it to show you a really fine example of what nystagmus actually looks like.

Your physician WOULD notice nystagmus on exam. Slight movement of the eyes and tracking issues are not the same as nystagmus. I noticed that my inner eyelid had been twitching, pulling on the eyeball and making it feel like the entire eye was twitching. It was not.

Focusing on something and having your eyes jump for a moment is also not nystagmus.

Contrary to what you will read online, nystagmus CAN occur in the general population for no ominous reason at all. Also, if you had MS with ON, the lesions would have been detected on exam, when your eyes were dilated.

The fact that you had a negative CT rules out most of the bad stuff. CT can pick up on MS lesions, but an MRI is more accurate for identifying the nature of lesions and whether or not they are active.

Here's the link...


Hope this helps,
Blessings,
Sue

Luckily, when I'm really distracted I don't notice it so it hasn't affected my vision all that much yet.

Please don't take this the wrong way. Are you sure this isn't psychosomatic? I mean, if I start thinking about it 24/7, I start having trouble looking at anything for more than three seconds as well. This happened to me yesterday afternoon, and I finally calmed down after reading SusyQ's post, and now it is happening again because I read this! As soon as I tell myself "it's all self induced", it completely goes away. I just find it hard to believe that a really bad condition would 1. go away when distracted, and 2. present without any vision loss (if it were MS).

The mind is a powerful thing. I develop twitches after I read about them. I developed BFS after visiting this board! If you look at my very first post ever, I came here with cracking joints and myoclonic jerks.

I'm just SO afraid of it being something bad because everywhere you look, it says that twitching eyes is never "nothing", there is always an underlying neurological reason for it. If that reason is BFS, I can absolutely live with that, but if it's something more.......well, that would just be devastating!

If/when you see a real DR, they will tell you twitching can indeed be nothing. Stop reading the Internet. It's too black and white, and half true.

usysparawl & firegoddess,

I too was convinced I had nystagmus and MS. Believe me, I WAS CONVINCED! Just ask LisaLM. I must of pm'd her about 60 times in regards to nystagmus and MS.

BUT I AM NOW CONVINCED I DO NOT AND NEITHER SHOULD YOU. HERE IS WHY.

1st: All of us have had clean eye exams

2nd: All of us have healthy optic nerves

3rd: Jerky eyes can be caused by many things such as eye strain and vision problems. This is not nystagmus.

4th: We have BFS. So who knows, maybe our jerky eyes are from that. If BFS can affect any voluntary muscle, why not the muscles that control the eyes

5th: We have been tested up the wazzoo for MS. None of us have this.

6th: We have all stated that we only notice this when we concentrate on it. Don't you think that this would strain our eyes and make them jerk. I do. Plus, do symptoms of nasty diseases come and go only when you concentrate on them or not? NO! If they were real symptoms, they would be there no matter what

7th: Anxiety and stress is a primary cause of vision symtpoms. Why could this not be one of them. That is exactly out of my doctors mouth.

8th: My doctor said he sees slight nystagmus in MANY people without any disease and that the internet never gives the whole story.

9th: My doctor said it is impossible to have 20/20 vision with nystagmus. I have 20/20 vision and so do you firegoddess

10th: From what I understand, nystagmus in MS is caused by lesions or damage from past lesions on the optic nerve. With a healthy optic nerve, it is not nystagmus from MS

You are both diagnossing yourself with MS and nystagmus. VERY bad to do. That is what I did. But we all have a clean exams from the docs. How come we can convince ourselves on a diagnosis but we cannot belive the docs even though they know MUCH MORE about this stuff than us.

If you don't convince yourself, you will keep searching for more answers. You will not get them. Each doctor will tell you the same thing. You can drive yourself nuts.

My wife asked me this long ago. She said "Do you want to be sick? You must, because you keep going to doctors and keep going for testing even though you have already been told many times that you are fine"

I said of course not. That really got me thinkingthough. Was I going to keep going through all of this for no reason except for myself convincing myself I had something. Almost like I wouldn't be happy until I got a MS dx. I think at one point, I might have even been relieved if I got a MS dx. Because then I could do the I told you so and confirm everything I have been thinking. Now that I look back, that was VERY STUPID!

My husband has bfs, and that's it. He still has nystagmus as I observed. He doesn't even notice his eye twitch. I was the one who pointed it out to him. His looks a little like the film I posted, only not as consistent and not as severe.

He has also had some balance problems/vertigo in the past, which seems to be common with bfs. I've had the same as well. Nystagmus and inner ear/vestibular problems often go hand in hand and are self limiting and benign.

My answer about the tracking problems and occasional jumping eye was for usysparawl, not you Firegoddess. I was trying to kill two birds with one stone, and I'm sorry I confused you.

Nystagmus would be a rare presenting symptom of MS. Optic neuritis, otoh is the first symptom in 80% of MS cases. It causes near-blindness, visual field cuts, double vision, and pain. Nystagmus is more unusual in early MS, and is most often associated with cerebellar lesions. Either one would be detected on exam, however.

A physician is examining you from the moment he/she lays eyes on you. When they tell you to follow their finger with your eyes, they are checking for nystagmus. When they hold up fingers and ask "how many," and move them around so you can track them, they are checking for ON and nystagmus. When they dilate your eyes and examine the optic nerve, they are checking for ON.

One very important thing about MS; it is characterized by brain lesions, remissions, and exerbations over time and space. Those lesions develop and do not go away for hours at a time during the course of a day. It is not characterized by nystagmus, which is a nonspecific symptom of many other maladies, and is often idiopathic.

If you had nystagmus associated with MS, it would be an ongoing and relentless symptom, and it would most likely be accompanied (and/or preceded) by other symptoms, such as balance issues, which would also indicate a cerebellar lesion. In other words, again it would be rare to find nystagmus all on its own as a presenting symptom in MS.

The brain lesions remit eventually, but only after several days or weeks until the next exacerbation, which is generally in a different area of the brain altogether. Next, there would be ON, or numbness, bladder symptoms, weakness/paralysis, etc.

Twitching is also NOT associated with MS. If you are twitching in extraordinary places, if I may be so bold, I would challenge you that there is no reason to even suspect MS. It is simply too indicative and typical of bfs.

But it's your call if you want to continue to pursue the MS work-up.

Just put MS on the bottom of your list of worries until you have something real to worry about.

Blessings,
Sue

FG,
I am all too familiar (like Wolvy,) with the freak-out over MS.

I just want to encourage you that it is REALLY easy to convince yourself of your unwellness, just by reading about specific symptoms online. Your mind is so very powerful, it will generate real symptoms just by power of suggestion.

I read about neurogenic bladder and was suddenly recalling times where my bladder was overactive and/or dysfunctional, and suddenly I developed a relapse of bladder symptoms. It turned out that I'd been so anxious, I stopped drinking and my bladder naturally responded to the lack of hydration with spasms and burning and (helloooo,) decreased urination.

I knew about people with MS feeling weak when exposed to heat/hot water and I immediately began collapsing in the shower and in my hot tub. In that case, it was shaky, weak-feeling legs from bfs, only I didn't know bfs existed at the time.

Then there were my own eye symptoms, where I felt a constant jumping in my eyes. The problem was, I couldn't get anyone to diagnose me with nystagmus, and the movement wasn't consistent. When I was on the exam table, naturally I wasn't feeling those eye movements. Then, I convinced myself that my vision was blurry when all I needed was a new prescription on my eye-glasses.

When my shoulders ratcheted and my hands tremored, I thought it was all some form of tremor, and assumed I must have had the worst case of sudden onset chronic progressive MS ever seen, because I'd already progressed to tremoring.

Then there was the tingling, the numbness, the perceived weakness, the inability to grasp finger foods or walk up or down stairs without help.

My neuro finally became so exasperated, he told me I was TOO ill to have MS and encouraged me to take my bloody Xanax.

Much as I stubbornly refused to acknowledge that I WAS anxious at the time, my understandable anxiety over this strange illness that had taken over my life and body was magnifying every symptom I was experiencing, and creating new symptoms where none had existed.

In other words, choose denial, my friend. As defense mechanisms go, it is an extremely helpful one. At some point, I had to do just that. In the back of my mind, I thought "well, if I DO have MS, I certainly can't get anyone to diagnose or treat me, so I'm better off pretending I DON'T have it." And I made up my mind that I just wouldn't have it.

Tell yourself, "I don't have MS," and go on with living, at least until you have your appointment. And then, make up your mind to believe it. You'll be surprised at how much better you feel. Even if your tests come out positive (which I'm certain they will not,) you will have had this time of peace and calm in the interim. And, WHEN they turn out negative (because they will,) you will not have wasted any more of your precious, valuable time worrying about MS. You can't get these days back. I lost four months of my life, and almost offed myself several times. Can you imagine, if I had, because I was so convinced I had a disease that I did not have? What a pitiful waste that would have been.

Blessings,
Sue

Gosh, we all sound so alike! It's amazing, yet comforting to know I am not the only one out there with these issues.

My journey started ten years ago after a VERY stressful life event. I was sitting in my office when a co-worker came in and said, "Look at your hands tremble, you got a nerve problem?" Shortly after that, my brother mentioned he had run into a classmate who had been diagnosed with MS. He mentioned a few symptoms (even he was concerned as it can be so vague) and I immediately went to the bookstore and read a book sitting there then diagnosed myself. I have ALWAYS been clumsy, dropping things and falling (they teased me in high school about it) but quite frankly, it was never the result of a real balance issue! I had the tremors, internal vibrations, the buzzing legs that got worse after a hot bath, water sensations on my feet . . . and I was in a complete frenzy of anxiety. I went to my GP about the tremors and he gave me a box of Paxil and sent me to the shrink. The shrink was wonderful, very much into neuro stuff, he did a neuro exam, asked me a lot of questions, and told me, "You can go waste your time and money on an MRI, but I promise you, you don't have MS. I have many patients with MS, and most of them cannot sit in that chair." He also said MS and anxiety mimic each other, that is why most people with health anxiety fear it the most. He gave me some xanax. He assured me my tremor was either essential or anxiety or inherited.

I eventually got better. No more MS despite the fact my legs still buzzed from time to time.

Fastforward to three years ago. Another major stressful life event. This time, my joints all started popping and cracking. I thought I had RA, and someone suggested to me to visit the BFS board, which I did. The day after my DR announced my joints were perfect, I began to twitch. We all know that story . . . new fear, ALS. I never did have an EMG because my neuro was so confident it wasn't ALS, but the BFS didn't stop there . . . then came the tremors and PD fears AGAIN, along with the racheting shoulders, imagined resting tremors, jerking limbs, and now this eye jerking thing.

I promise you, that like SuzyQ, I can read about something and develop it, or think I have developed it. I have read about twitch after twitch and gotten every one of them the next day!

I've had blurred vision (so I thought, but last exam he said my eyes had gotten better), ringing in my ears, heart palpitations, numbness . . . the list goes on and on! But it all goes away with either xanax or klonopin of a glass of wine or just time and reading posts like these.

I hope I didn't bore you. I agree 100% with 17Wildcat17 and SuzyQ. They make perfect sense! We all have BFS and health anxiety and maybe one causes the other, I don't know, but we are in the same boat.

P.S. I've never had an MRI, and I am not going to have one because my eyes jerk when I stare at something. If I get double vision, collapse for no reason, lose function in one arm, or have numbness in one side of my body, I will go.

Thank you all so very very much. Thank you for sharing, for offering advise and support, and for being here for me when I needed a friendly voice the most.

I saw an opthamologist on Monday. I think he is probably the oldest opthamologist in Canada. He's seriously as old as dirt, which is probably why I got an appointment with him in 2 days!! I wondered what was up.....and now I know. He's also an eye surgeon.

He looked in my eyes and said he saw no sign of optic neuritis, which is GREAT, and that he was no other signs of MS in my eyes at all. He also said that he saw absolutely no sign of nystagmus in my eyes either, which was great!

I keep telling myself that he has lots of experience if he's so old - it was the only thing that made me trust what he told me, because he was just so crusty and "grumpy old man like" when he was talking to me. I was clearly upset at one point, and he said "now you listen here, little missy, you have no other MS symptoms, so calm down". In hindsight, that was pretty funny.

I was going to get a 2nd opinion, but I think I am just going to leave it until my neurologist appointment later this month.

I am still experiencing the eye twitching, but it's better than it was a month ago, so as long as I feel it's getting better, my stress level stays lower.

A new scary thing though is dry eyes at night. I wake up in the middle of the night a lot with anxiety, and I get so scared because it hurts like heck to open my eyes because they're all dried out. I put drops in and 2 hours later, they're dry again. They are not at all dry like this during the day. I never feel the need to put eye drops in during the day - only at night.

Anyone else ever experience this?

When I mentioned it to the opthamologist, he said it was stress related.

Funny- I got dry eyes a TON in the beginning of this. So much that I felt like I couldn't open them in the morning. Never thought about it being related but who knows?

Firegoddess,

I am on Zoloft. It has helped big time with my anxiety and panic attacks. When I went off of it about 2 months ago is when I started worrying about the nystagmus again so I went back on it. I hate taking drugs but it really helps me.

I have a stiff pinky as well as every other finger and my whole hand in general. It is either carpal tunnel, a compressed ulnar nerve, or BFS. In either case, with the clean EMG and neuro exam, I know it is nothing nasty and I'm sure it is the same way with you.

Let us know how your neuro appointment goes in 2 1/2 weeks. I'm sure you'll be posting again with great news.