Multiple Sclerosis (MS) Support Group

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Brain & Nervous System
/ Multiple Sclerosis (MS) Support Group

Constant Oscillopsia/Reflex/Balance Issues

strizzlow20
strizzlow20
Hello Everyone. I'm not going to write everything i have been through in this posting because I'm not sure if I should be in this forum but I would like to pick some people's brains. Since April I've had some neurological issues that cannot be explained. I have Myasthenia Gravis which obviously causes problems, but what I am experiencing isn't normal for that condition. I am having an issue with oscillopsia but it's constant and it's left to right without visible Nystagmus. You wouldn't believe the amount of testing I have had. So far, no vitamin deficiencies, normal MRIs, normal EEG, normal spinal tap, and normal EPs. What has finally come back abnormal that is different is my VENG. I had little to know caloric response in either ear which typical indicates a central issue. My eyes also show some very mild saccades and abnormal tracking at 40 degrees.I am also noticing my reflexes seeming a bit off and my coordination. My ankles and hands don't do exactly what I want them to do. I'm started to notice tremors in my neck when I lift it off of the bed, which could be weakness from MG, but who knows. The doctors in Florida haven't been great. I get mixed opinions and sometimes very little advice. What's weird is that I am being effected bilaterally. From my shin down and my forearms down my muscle don't feel right. I can feel pin pricks, but they feel like they're half asleep some times and it takes great effort to use my arm to change the radio station, pick up a drink, use a key to get into the house. Walking around is a bit of a pain too.. My handwriting is slower than it used to be and I have to try extra hard to make it look like it used to. I'm sure these are all really bad signs and because of my age (27) MS hasn't been completely ruled out. I just want to know if anyone has had problems with their eyes outside of optic neuritis. I've seen three neuro-ophthalmologists as well that couldn't find anything. The third and only neuro ENT to actually run balance tests referred me to University of Miami where the doctor performing the tests said the rotary chair and VENG came back abnormal and she was extremely surprised that it was abnormal. She even found I have a convergence issue with my eyes at times. Who knows what it means. I'm visiting my neuro tomorrow because I am re running MRIs on a 3T with and without contrast to keep an eye on things. I'm pretty sure what I am experiencing is some form of ataxia. I've also recently cut out gluten and my diet consists mainly of smoothies with tons of veggies and fruits. I've increased my water intake as well. In the mornings, I notice my eyes seem to subtly flicker up and down when I am trying to wake up and function. If someone is interested in seeing a visual of what I am seeing, it's below:

http://www.migraine-aura.com/content/e27891/e27265/e26585/e48971/e48990/index_en.html

Thanks for your time and sorry to bombard this forum with questions. Just looking for some answers or someone I may have some things in common with.
deleted_user
deleted_user
yes that's a lot. i have ms without a doubt. my family often reminds me that some of the things i complain about everyone else experenies too. it's a part of being human, irritates those without ms too. normal isn't single number everyone must meet, normal is a range. some are above the medium point, some are below.
i have big feet, i would like it better if i had meduim size feet. but my big feet are normal.
i'm unsure if what i am trying to say is comming out correctly---if one thing is seriously wrong its very easy to be hypesensative to things that are within the normal range but not perfect.

you have so much going on,consider going to mayo. where they have multiple specialties evaluating a problem. here on this site i remember reading posts from people who suspected ms 1-it turned out to be arthritis 2- somew type of rare digestive disorder? a multi specialty evaluation can pick up that kind of thing up.

http://www.mayoclinic.com/
deleted_user
deleted_user
btw,ms can't completely be ruled out for anyone.

an ms diagnosis goes:
suspected ms-> probable ms->definite ms

2009 differential diagnosing guide for ms---contains probabilities that it ma develope into definite ms...
http://msj.sagepub.com/content/14/9/1157.abstract

2010 mcdonald ms diagnosing guide;
http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=4713
strizzlow20
strizzlow20
Thank you for the reply. Some of the new testing has pretty much determined there is CNS involvment based on the balance tests and now possibly having a preset Babinski sign in my right foot. Who the heck knows honestly. It's stressful and hard to envision being normal. I've never had an clear remits with these symptoms so to me it's just subtle progression. We'll see what happens.
Keithgray
Keithgray
I have constant issues fixating my eyes on objects, like it's unstable? Is this what you get??
strizzlow20
strizzlow20
Hey there, it's been a long time since I've been on. Sooooo for an update. I started having issues with my eyelid and looking back on pictures that past 6 month I noticed it more in my left eye. In the sunlight it would droop just slightly/ my eye would look like it's closing up. It came and went. I went to be tested and have my yearly lab work done and boom, I wasn't positive for MG for the first time in 10 years. I also noticed they decreased the threshold for the antibodies, but still. How crazy is that? I have more of the nystagmus and jittery eyes than eyelid issues. My doctor isn't backing down from my MG diagnosis since it was positive yearly since I first started having issues. I had an MRI just to check for lesions and it's clear. I have nothing indicating CNS issues to this day.
lorrieonline
lorrieonline
That is fabulous news strizzlow20. I pray you continue to be clear of those issues! Thank you for sharing!! My left eye lid seems a tad droopy but I just figured it was thyroid. Hmm. Have you followed a special diet and/or exercise plan at all? Very happy for you!
strizzlow20
strizzlow20
Hey, no I havent followed a specific diet although being active if and when i can has helped. Thyroid can definitely cause that from my understanding. I have that checked yearly with the MG antibodies as well. My mother has thyroid issues.
strizzlow20
strizzlow20
I wanted to respond to Keithgray I dont think I wae clear but yes, fixation was and still is an issue. Severity fluctuates
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