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Postby ebrownkirkland » Wed Jan 10, 2018 9:28 am

I have a question about nystagmus. I tend to notice mine when I am really focusing on something, like when I am reading, for example, and my eyes will jerk left to right really quickly. Sometimes they'll just jerk once or twice, and sometimes they'll go back and forth a few times before they stop. I don't remember when this started, but I do know it's been happening for awhile. My mother never has this, but I explained it once to my 11-year-old and she seems to think that she has it, too (although she's 11, so she may not understand entirely what I'm talking about). My question is, do you think this is a congenital abnormality, or is this caused by my MS? Doc says it's caused by the MS, but I have always wondered if it is something I just "have." As I said, I don't know how long I've had the nystagmus for, but I know I've had it quite some time. Doctors began to look into an MS diagnosis for me almost eight years ago, but I was just diagnosed this past July after an MRI found a large, active lesion. (I have a number of lesions, but the two MS specialists I have seen were most concerned about the active one. I also had a sky-high lymphocyte count that was discovered in my cerebrospinal fluid about eight years ago thanks to a lumbar puncture.)
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Re: Nystagmus

Postby koneall » Fri Jan 12, 2018 8:53 am

I remember as a teenager there were kids who could do that. Some were able to do it on command. A couple said it was involuntary. Nystagmus is often the result of semicircular canal imbalance. My first sign of MS was nystagmus. The room was spinning and I had to hold the wall to keep from falling. I could feel the spasms in my eyes and loudly told the emergency room staff to look at my eyes.
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Re: Nystagmus

Postby Music » Fri Jan 12, 2018 8:47 pm

My maternal grandparents don't have M.S. or Nystagmus. They had 11 kids - 2 born with Nystagmus - my Mom and one of her sisters. None of the 11 has M.S. None of us 1st, 2nd, 3rd, etc cousins has Nystagmus. I'm the only one with M.S. and am not related to anyone with M.S. on either side of my relatives.

Are M.S. and Nystagmus related.....who really knows.
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Re: Nystagmus

Postby Snoopy » Sat Jan 13, 2018 6:29 am

Hi ebrownkirkland,

I would not be overly concerned but if your daughter hasn't had a current vision check-up with a Pediatric Ophthalmologist I would suggest getting her one. The link below explains nystagmus and possible causes. Children mimic parents so it's really important not to discuss with your daughter what you may or may not be experiencing with this disease. I have read many times where children, after over hearing their parent with MS discussing their symptoms or how they are feeling the child then starts having the same complaints.

I had 2 children after my diagnosis, my husband and I had discussed early on we did not want our children to know there was anything wrong with me. We planned on keeping it from them for as long as possible. It worked until my son started asking questions at about 13 years old. I know you were diagnosed recently so it would have been more difficult to keep from your daughter. I would just recommend caution about what is said if there is a possibility your daughter can hear.

https://www.aoa.org/patients-and-public ... /nystagmus
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