Eye issues and dizziness

First of all, I do not officially have an MS diagnosis; I am merely trying to figure out what has been going on for at least the past 12 years (off and on). My main symptoms began then as pretty bad bouts of vertigo which would cease after about a week, but left my eyes very “wobbly” for at least another week. That meant I could not drive, look up or down, or turn my head because my eyes would not follow very well. These “bouts” came and went with no rhyme or reason, but most often happened when I slept (they appeared upon awakening). They were quite debilitating as I would find myself lying on the floor crawling because I was so dizzy and could not see “right” for quite some time.

I went to my GP who referred me to a local ENT. They performed tests including the one in which they blow cold air into my ear canals while lying down and then sit you up quickly. The doctor went on to say that that my tests were abnormal, but he did not know why and dismissed me. Nice. My GP then suggested that I travel out of town to another ENT. I did so finally years later when I could no longer stand these bouts (which sometimes were months apart). I endured a half a day of testing at this facility and two doctors had different opinions of what was going on. One suggested migraines (which I did suffer as a teenager, but not anymore as an adult); the other doctor mentioned Meniere’s Disease. They put me on diets for both and medication for the migraines. I did whatever they told me to the tee and began the migrain medication (Topamax). My symptoms seemed to subside but not disappear altogether.

Forward ahead to today: Throughout these years I continue to take the Topamax and have pretty much questioned both diagnoses. I question the migraine diagnosis because my migraine symptoms do not fit any I have read about. The Menieres never did really fit. My “bouts” continued during these years very sporadically–sometimes I would not have one for 6 months or longer, yet I just recently had 3 bouts within 6 weeks (they were minor). Stress seems to have alot to do with the bouts, and I am thinking a recent MMR injection may have caused a bout (this being the worst one).

My symptoms: Mostly seem to appear after sleeping/upon wakening; however I sometimes can feel them coming on if I have been reading or studying or have had a very stressful day. Always I become dizzy–sometimes alot, sometimes just enough to become nauseous but I can still go to work. With the dizziness, my eyes become wobbly and I do not see “right”. Even when the dizziness fades, the wobbles in my eyes do not go away for days…I cannot look in a mirror for some reason as it makes me nauseous. I have lots of trouble seeing in dusk/dawn, and I am always trying to turn on more lights to see well. I have had stabbing pain in my left eye (which I am trying to get in to see my eye doc today for). I have not had issues with limb numbness, but do get prickly/tingly feelings in my feet at times. I do trip and run into things alot, but I do not know if this is just me. The last “bout” I had I was in extreme heat that day playing volleyball AND had just received an MMR vaccination for work.

Can anyone tell me if these sound anything like MS?? My “bouts” come and go infrequently, but are at times quite debilitating. I have been searching for years for something to go with. I am a nurse and I cannot believe how dumb I am to not be able to figure this out, but my symptoms are just so strange. One other thing—I have been quite anemic for awhile which caused even more other symptoms (unrelated to the ones I have been having: shortness of breath, swelling legs, cravings, extreme fatigue, etc). I think we have that figured out, but am wondering if I might have MS, is anemia something people with MS have too?

Sorry this is so long—I have soo many questions…


Have you ever had an MRI scan done or CT scan? Also I’m sure you’ve probably already done this but have you had your eyes tested? I get dizziness like the bouts you explain but my neurologist is referring me to an ENT specialist as he suspects that my dizzy bouts are due to an ear problem with the Eustachian tube. The fact that you have seen an ENT specialist and they said something wasn’t right but didn’t refer you for any further investigations warrants an appointment back to the gp to find out more of what’s going on - so I would definitely go back to the gp about it. Also you mention that you’re anaemic and have been for some time - is this being treated? Anaemia isn’t typical for ms from my experience but perhaps other people can advise