LastUnicornLady Posted June 1, 2014 Report Share Posted June 1, 2014 Hey, everyone. I shared I while back that I had started experiencing nystagmus (or what we figured out must be nystagmus). Everyone said I ought to bring it up with my doctor, but with all of the other things we talked about at my appointment last week, I wasn't able to bring it up. Since then, it's been increasing in frequency. What I'm wondering now is if I need to make an appointment to talk about it, or if I can wait until my next scheduled appointment. We haven't gotten it scheduled, but we'll need one pretty quickly to talk about my test results when we get those in. So, would it be OK, do you think, to just wait until that appointment? Or is this something serious that needs to be looked at sooner? I mean, I'm not even sure I would be able to get in sooner- he had a long wait period last time, and it might be like that this time if I tried to get an appointment now... I also have a few other doctor I am seeing, who I might be able to talk with if needed, but I'd rather see him. Anyways, is this an emergency??? Should I be worried? Obviously you can't give medical advice, but what would you do if this was you? Have you ever experienced nystagmus? Quote Link to comment Share on other sites More sharing options...
corina Posted June 1, 2014 Report Share Posted June 1, 2014 Anabanana, you could telephone your doctor's office and talk this over. I think they are the ones to know whether they want you in immediately or give it time until your next appointment. Good luck! Quote Link to comment Share on other sites More sharing options...
ophelialit Posted June 1, 2014 Report Share Posted June 1, 2014 Hey there! From what I understand as someone newly diagnosed with a spinal syrinx, nystagmus can sometimes be a result of Chiari; I'm not sure if you've been evaluated for--or diagnosed with--Chiari, but nystagmus is actually listed as one of the presenting symptoms on my handy-dandy little pamphlet the neuro gave me. Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 1, 2014 Report Share Posted June 1, 2014 I agree with Corina that you should call and talk to the doc about it. They'll let you know if you should come in sooner.I have nystagmus that we believe is a result of my unstable c-spine. Nystagmus is a neurologic symptom and can be caused by something relatively benign but it can also be a sign of something more serious, so best not to brush it off. I do suggest that you try to take note of what you are doing when the nystagmus happens. For example, I figured out mine happens only when my neck is in flexion or when moving from neutral to flexion and back. This helped us figure out why it happens. Quote Link to comment Share on other sites More sharing options...
LastUnicornLady Posted June 3, 2014 Author Report Share Posted June 3, 2014 OK, guys! I've had a busy several days, and haven't been able to get on here for a while. Thanks for you ladies kind responses- they've been super helpful. I have definitely figured out that it only happens when I'm looking down at something, such as when I'm reading or crocheting. Those are the times I notice it the most. I hadn't really thought about calling my doctor before (I guess because I've never done it), and I guess I will see about calling him soon. I got the tests done (after some definite procrastination on my part- the idea of scooping poop into a test tube is just not very inviting, you know!), so we may end up just waiting until I meet up with him to talk about those. Quote Link to comment Share on other sites More sharing options...
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