Multiple Sclerosis Community
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405614 tn?1329144114

Vision issue I wonder about

Went to Phoenix for a long weekend, to see a WNBA game with friends.  Took care, but got tired a lot in the heat, tremors got worse, felt almost too tired and shaky to stand at times.

The question comes in because while I was watching the basketball game; the women running up and down the floor, the stats and scoreboards, all the lights in the arena, my vision suddenly started flickering.  I couldn't focus and my eyes felt like they were jumping around.  It only lasted for a few minutes, but then I felt overwhelmingly tired and it was hard to even sit up, hold my head up.  I was kind of dazed and exhausted for the rest of the game, and after when my friends and I went across the street to the Hard Rock Cafe.  I had to lean against a wall while waiting for a table, use the hand rails going up the ramp to a higher level, wanted to put my head on the table.  I pulled myself enough together to laugh at jokes, but really don't remember all of the evening clearly.

My question is, do I call my ophthamologist about the vision thing, or call my PCP?  Or just chalk it up to another weird health event in my life?  I have no neuro anymore, so that's not an option.  Oh, and before this all happened, my heartbeat was irregular.  I am sensitive to smells and sometimes get an irregular heartbeat when I am around a strong cologne, and I was that night.  I don't know if that is connected at all.

I'm pretty tired from the flight home and all, so I don't know how long I'll be up, but if anyone has any thoughts, I'd be glad to hear them.  If not tonight, tomorrow.

It's good to be home.

18 Responses
400099 tn?1282954864
I don't know, but I react weird around strong smells, candles, calogne, and even walking down the laundry detrgent aisle can make me sick. I've had the flutters with strong smells, too. When I've had the flutters like that, it exhausts me.

Sleep tight.

220917 tn?1309784481
bump up from Crazy Poster
405614 tn?1329144114

Good to see you again.  I remember your screen name from when I first joined this forum, then I didn't see you around for a while.  I hope you're doing well.

It's nice to hear from another scent-sensitive person.  Patchouli makes it difficult for me to breathe, and perfumed things, especially fabric softner coming out of a drier vent while I'm out walking, really cause me problems.  I once went to a Day of Peace with Thich Nhat Hahn in a big park in Oakland, CA, and they had a section roped off for chemically sensitive people; a "no cologne zone"; it was heavenly.

My cat was so glad I'm home that my sleep was broken, to say the least.  

Hi "Zilla, did I ever tell you my family was from MI?  Mom from Detroit, Dad from Escanaba.  I may have forgotten how to spell that. Just a little aside there.  Good morning.

405614 tn?1329144114
Do no comments mean that I shouldn't worry about this incident?

382218 tn?1341181487
I think anything with the eyes should be checked out by an ophthalmologist.  Err on the side of caution.  

When I read your description of what occurred, my first thought was perhaps this might be nystagmus.  This is an eye movement disorder characterized by an involuntary jerking of the eyes.  I'm not sure though if it comes on as suddenly as you described and then remits after such a short period of time.  

I have downbeat nystagmus which apparently often accompanies INO, which in my case is the cause of my double vision.  However I have not experienced anything like what you describe.  Nystagmus can be very mild and unnoticeable to the patient, as it is with me, or it can be pronounced and persistent, causing the eyes to be 'wobbly' all the time.

If it were me, I'd go to an eye doc.  If it's nothing, then that will ease your mind.  If it is something, better to know about it and do whatever you can to deal with it.  Also, it may reveal important information towards determining a diagnosis.

405614 tn?1329144114
Thanks for responding.  

My neuro's chart notes about my neuro exam said something like: with eye fatigue there may be some subclinical INO with rapid saccades.  I couldn't figure that out, since it seemes most of the articles that come up with you google INO and saccades are at sites that you access with a paid subscription only.

My ophthamologist said my exam and VFT were fine, but to call him if there was any change in my vision.  My neuro and PCP said no nystagmus on exam.  I've felt my vision is blurry even though I got new glasses not long ago.

I thought that the short duration of the eye "jitters" probably meant that it wouldn't raise any red flags with doctors.  My vision still feels slightly jittery, so maybe I should call my ophthamologist.  It may just be because of my fine tremors.  I keep going back and forth.

You're right, I'll do it.  I'll call and ask if I should be seen.  Thanks, db.

338416 tn?1420045702
Kathy, I had nystagmus as well as some optic blurring of my right eye, and it sounds very much like your eye jitters.  I found that i couldn't look at small type on a package, because my eyes were vibrating back and forth.  I had to close my eyes and rub them just so I could get out of Walmart.  I've also had spinning vision, which was actually my eyes tracking in a circle, but what it looked like was that the room was spinning.

Since you don't have a neuro, then you'll need to talk to your opthamologist.  But this sounds very much like a neurological problem, and should be brought to a neurologist.
405614 tn?1329144114
I need to find a new neurologist, one that has more experience with MS.  My last two were a waste of time.  I think I know where to look; out of my insurance's network, but it will be worth it.

My ophthamologist will probably send a note to my former neuro; oh well!

338416 tn?1420045702
Good luck, Fluff!  I know this is frustrating.
405614 tn?1329144114
I called my ophthamologist's office and left a message explaining what had happened.  It took a while to get the call-back, and it was his assistant/tech, I'm not sure what her title is.

I explained it again, and she said; oh, its nothing to worry about, it happens to people all the time.  I told her that I was 45 and it had never happened to me before, and because of my MS work-up I was concerned.  

She said, well, OK, I'll talk to the doctor, and it he thinks its anything to be concerned about, then I'll give you a call back.

Had she just called with her opinion?  Was she qualified to give it?  Sigh.  At least I can see to read book; computers are more of a challenge since they are light and electricity and can wear out the eyes quickly.

Thanks, jen

382218 tn?1341181487
Like you, I would question whether that individual is qualified to give such an opinion, over the phone, without examing you.  "It happens to people all the time"?  What??  I have not heard of this happening to people all the time.  I would ask her, OK then, so causes this to happen to people all the time?  Ask her to explain what mechanisms are involved, and what triggers is, and find out whether she actually has any idea about this.

Do you have to wait to hear back frrom your ophtha, to see if he thinks it is anything to be concerned about?  Or can you go ahead and book an appointment regardless?  I should think it would be your perogative to book an appt, and not that of the assistant/tech.  

Good luck and keep us posted.

405614 tn?1329144114
I can go ahead and book an appointment.  I guess I'm concerned that they would code it so my insurance wouldn't pay if they didn't think I had an issue worth being seen over. That might seem silly, but I've had coding nightmares before.  I have a friend that has owned her own billing company who helped me through that one.

I think I'll call the advice nurse at my PCP's office and ask what they think.  That may be a good way to approach things, as the advice nurse makes a record of my call and issue, even if I'm not going to be seen.  I'll see what they say.

Thanks for helping me look out for my eyes; they're kind of precious to me!


506846 tn?1217265961
I just posted this in another thread but just in case you don't see it.

You had said that you were looking for a new Neuro.

I saw that you are from Portland, my brother has Ms and see a Neuro at OHSU at the MS center.  I know he is extremely happy with both his Neuro and the facility. If you haven't tryed a neuro there it might be a place to check out.

Best of luck,
405614 tn?1329144114
I had heard from other people on the forum that at OHSU you always see a different doctor, they don't treat symptoms, and other not-so-good stuff.  Does your brother see the same Neuro at each visit?  

My choices are OHSU or Providence. I've heard good things about the MS neuros at Providence.  My sister is happy with the care she gets at OHSU (non MS), so I'll have to check out both places, I guess.

UPDATE:  I called the advice nurse at my PCP's office about my visual event this weekend.  She thought I should be seen, but the schedule was booked up.  She talked to my doc and called me back; my doc will see me at 10:40 tomorrow.  My PCP is the best!  


506846 tn?1217265961
He does see the same Neuro each time.  Actually she is the only one he has ever seen.  

He is on Copaxone and has not had a recurrence.  He was diagnosed in 2002.

I don't know much about Providence but check it out it sounds like a good place to try.

I can try and find out his Neuro's info and let you know what I find out.

Best of luck and if I come across any thing else I will let you know.
405614 tn?1329144114
I would love to have your brother's neuro's info.  My past referrals have come from doctor's, and they don't know the neuro from the patient's side of the room.  If you find out her name, please send it to me in a message, and I'll see if I can get in to see her.

Thank you very much, you're great!

506846 tn?1217265961

I will find out and send you a message with the info.

I found referrals from other doctor's are not always the best also.

You deserve a good Neuro, we all do.  The hard part is finding one!
405614 tn?1329144114

My doctor thinks I had a seizure and is sending me for an EEG on the 27th.  If that doesn't show anything I will strongly suggest a 3 Tesla MRI of my brain w & w/o contrast asap.  

This event was too frightening to let slip away.  I want to know it's cause if at all possible.


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