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nursejenn1012
Regular Member


Date Joined May 2009
Total Posts : 104
   Posted 5/14/2009 9:27 PM (GMT -6)   
does anyone have nystagmus? and if so, does anyone have it while only looking in one direction?? I have it only when i look to the right, sometimes up, i have no control over it,
i usually have to wait a min for my sight to become clear after.

thanks
Jenn

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 5/14/2009 9:52 PM (GMT -6)   
I have mild nystagmus while tracking ......like during reading.  Mine does not get better no matter what I do but it is quite mild. 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


MJB68
New Member


Date Joined May 2009
Total Posts : 13
   Posted 5/15/2009 11:07 AM (GMT -6)   
Can someone define "nystagmus" for me? Does this have something to do with eyes jumping around or not staying still?
This is one of the main reasons that I had finally went on a sick leave. I was a case manager and was having a terrible time during case conferences anytime I had to look up at people around the table. My eyes would go crazy and it would cause me so much anxiety and made me feel like people could notice this. I kept my head down as much as possible before I went off sick. I just couldn't take all of this little things like this anymore while at work. The pain, the fatigue - all of that I know I can work though until my body doesn't let me anymore, but the little things like my eyes, brain zaps, wetting my pants in public, tremors, windows with blinds making me dizzy, florescant lights making me feel like I am on another planet. All of the stuff that people could see in me is what finally broke me down. Sorry I am off track. Is this what nystagmus means - a uncontrollable movement of the eyes?
Thanks
MJB

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 5/15/2009 1:39 PM (GMT -6)   
MJB,

Yes, nystagmus is involuntary eye movement. It tends to be vertical or horizontal. I assume you are seeing a doctor for your many health issues? If not, please see one as soon as possible! You have a lot going on! Welcome to healingwell.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


MJB68
New Member


Date Joined May 2009
Total Posts : 13
   Posted 5/15/2009 2:06 PM (GMT -6)   

Hi Gretchen 1;

Thank you for replying so quickly.  I have a GP that I see every week.  He refuses to refer me to a neurologist, even after having physiotherapists write letters to him telling him that they can't help me and that they feel I need a neuro exam.  Being in Canada, the way our health care works we need our GP to make a referral to see any type of specialist.  Some GPs like mine worry about wasting time and resources.  Mine will not send me to neuro until and unless an MRI comes back unclean.  I had one brain MRI last fall that came back clean.  With all of the symptoms I had been experiencing, and more so the onset of so many new ones in the last 2-3 years, my GP has told me that he cannot give me an official diagnosis and that we will have to continue doing MRIs until something shows up.  In all of these years, this Doc has not even touched  my body, checked my reflexes, nothing other than giving me a b12 shot as far as even touching me goes.  Currently though, I am on a sick leave from work and I have accessed my benefits through work for long term disability.  Thankfully the job of insurance companies is to get people back to work and in my case it means that they will go above my doctor and send me to independant medical specialists in order to determine the exact nature and level of disability.  This will mean answers for me finally.  Most people complain about insurance companies not leaving them alone, but in my case I am going to use this to my advantage and hope to finally get to the bottom of things. 

My eyes have been jiggling around for a while now. It gets worse when I try to focus in on something, and is especially bad when I try to look someone right in the eyes.  It's one of those symptoms I put in the category of "can people see this?" paranoia.  When I finally get confirmation of my medical appointment through the insurance company, I would really like to get some input on the forum about how to be prepared for this new doctor, making sure I don't leave anything out.  It's hard to explain this whole thing over and over again to different people. I want to make sure that I don't leave this one appointment without covering everything, and I pray that I get a referal to neuro because I know I desperately need help.  My body does not listen to my brain anymore.   I don't know what I will do if that  referral doesn't happen.

Thanks again,

MJ


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 5/15/2009 3:35 PM (GMT -6)   
MJ,

One strategy that a lot of people use it to keep a record of their symptoms. Do this without emotion.
For example:

1/21/06 - Eyes have involuntary movement, especially when focused on a stationary point. Ongoing.

3/23/07 - Numbness and tingling in left leg. Disappeared on or around 8/15/07

Just let the doctors know what is going on. You can send this ahead of your appointment or you can deliver it upon examination.

Just don't get too emotional ( I know, I ask the impossible!! ) as many doctors will then assume anxiety.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


MJB68
New Member


Date Joined May 2009
Total Posts : 13
   Posted 5/16/2009 10:57 AM (GMT -6)   

That's a great idea Gretchen.  I am going to start back tracking now to when I think symptoms began - starting with the weird eye episode in 94.  I can even get the hospital records for that because it was the day after an eclipse which would have been May 11, 1994.  Maybe bringing those records with me will help paint a better picture as well.  I'll start from then and jot down everything I can recall up until this point.

I know what you mean about the anxiety and how it causes the medical profession to assume that anxiety means we're psycho somatic.  I've heard that before.  Meanwhile, they fail to realize that this painful process will cause depression and anxiety all on its own.  I will  make a dated list as you suggest, and very calmly go over it with the new doctor.

Thanks again,

MJ


 


nursejenn1012
Regular Member


Date Joined May 2009
Total Posts : 104
   Posted 5/18/2009 10:04 AM (GMT -6)   
Ok, so i went to the eye dr, the real kind, not the kind that you go to for glasses. He dialated my eyes and said they looked fine, but i had nystagmus and ocular migraines? Has anyone ever heard of ocular migraines?? I get the regular kind, with the headache. he said i need to go to a neurologist, my appointment is not until june 12th but at any rate i ruled out a detaching retina..as i rule out things i am getting a little worried that they wont find anything, and i will be stuck with these symptoms and have no relief :(.. eyes --this little character is what my eyes do when they get bad
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