Double Vision and Nystagmus - HELP!

In the past, I have had issues with some double vision and nystagmus when looking to the right, but I now have something new.  When I have had double vision in the past, I would cover one eye to only see "one."  I noticed recently that when I cover one eye, the "seeing" eye has nystagmus no matter what direction I look - both sides do the same thing.  This has been going on for the past two months.  I went to my eye doctor and he told me that not only is does the "seeing" eye have nystagmus, but the covered eye drifts towards my nose.  My eye doctor referred me to a specialist who specializes in eye movement disorders and patients with head injuries....he and my neurologist have now referred me to a neuro opthamologist....that appointment's not until the end of this month.

I still don't have a diagnosis.....I'm really, really scared.  I am praying to God I have MS, because if it's not, I'm afraid of what it could be....I've had MRIs, so I know it's not a brain tumor.

Does anyone else have this???  :( :(

[Dagun]

Hi Srohrer, I am so sorry about what you are going through, but I can´t help you. I´ve only had blurry eye and floaters. Not even sure if it has anything to do with MS.
But like you, I know that nystagmus and seeing double is a symptom of MS. I hope someone else here can tell you more, I am just one of the limbolanders. It´s a good thing that you are going to see a specialist. Take care and good luck.
My best,
Dagun

[JaneK1975]

Hi sroher. I have not had the symptoms you describe, but I have heard of many MS'ers who have had nystagmus. The thing is, nystagmus can be caused by things other than MS, so there's really no way to know where yours is coming from without a full work-up from the correct specialists.

I know you are scared, and you have perfect right to be. I hope you can focus on the fact that you are under a doctor's care and scheduled to see a neuro opthomologist. It sounds like you are on the road to getting some answers, although I know the wait is excruciating. I wish I could say something more helpful.

I wish you all the best and hope you'll stick around for support. I am truly sorry you're going through this.

- Jane

[zoefromsussex]

Hi, I'm also really sorry to hear what an anxious time you've been going through. Eye issues can be very scary because of all the possible causes. I have optic neuritis and was also scared about worst case scenario's such as a tumour. You don't mention whether your MRI revealed anything or whether you've had other symptom's? I will keep my fingers crossed for you that you get some answers at your appointment and you know you can always post on here for a bit of support!
All the best, Zoe

[srohrer]

Thank you for your kind words.  I have been struggling with various symptoms since the late 80s.  The majority of that time, I ignored what was going on as the symptoms were not that bad and came and went so it was easier to ignore them than deal with them....plus there was no treatment anyway.

The thought of not being able to drive is the part that scares me the most.  I keep hoping that the double vision and nystagmus will go away or at least get better, but it has been the past few of months that have really freaked me out with the symptoms getting much worse.

My MRIs show about 9 lesions.  My first neuro says "probable MS."  The "msologist" that I saw says he does not believe it is MS because the lesions are not in a part of the brain that he would expect to see them to diagnose MS, but he doesn't know what is wrong with me.  

My first neuro wanted me to start the MS modifying drugs, but the "msologist" said he would not recommend them to anyone who didn't have a definite diagnosis of MS, so I have not started them.  The worsening of my double vision and nystagmus started some time after I saw the "msologist."

When last I spoke with my first neuro, he said, "maybe the neuro opthamologist will be the tie breaker," as to whether I start the drugs or not.  I don't want to take drugs if it's not MS, but I don't want my symptoms to get worse either.

My appointment with the neuro opthamologist is not until the end of this month.  Guess I'll just have to wait and see what he says.

Thanks for your support.  Take care.

[kwarendorf]

Hi sroher -

Fortunately my nystagmus and resulting double vision are relatively well in check. I'm sorry yours seems to be galloping away.

Lesions are only part of the puzzle. Other pieces include blood tests to rule out other possibilities and a lumbar puncture. Have you had these?

Kyle

[zoefromsussex]

So it would seem most likely that you do have MS? It's hard to keep up with these doctor's sometimes, isn't it?! One will say 'probable MS' then another will throw something else into the mix and it becomes confusing. You obviously know that the eye issues are a common symptom of MS and I really hope you get a proper answer from the neuro opthamologist for your own peace of mind. Could you go back to the initial neuro and discuss the merit's of starting a dmd? It's just a thought.
Zoe

[srohrer]

Hi, kwarendorf.

I've had lots of blood tests for all sorts of things.  Lyme disease, lupus, B12 dificiency, and sarcoidosis have all been ruled out.  I had a lumbar puncture many years ago and it showed increased proteins, but no bands.  It was a nightmare and I really don't want to go through that again.  The msologist wants another one, but so far I have not agreed to do that.

Just got a call from the doctor that I have been waiting to see.  They have rescheduled my appointment for a week later as the doctor will be out of the office until March.....frustrating.

[srohrer]

Hi, Zoe.

Yes, one doctor says it is "probable" that I have MS and wants me to start Copaxone.  The other "MS specialist" says that he does not believe I have MS and does not want me to start Copaxone.  I really wanted to wait to see a new doctor who is a "neuro opthamologist" to see what he says; and I am counting the days.  

I'm quite concerned as my double vision and balance, just within the last week, are worse.  I keep waiting for it to get a bit better, but it seems to be moving in the wrong direction.  I think I may call this neuro opthamologist back and make a pest of myself to see if I can get in sooner.  I hate to be a bother.

[tammy197238]

My first MS symptom was nystagmus.  It still isnt totally gone but improved greatly...i only notice it when i look hard left or right.  
I wouldnt worry about being a bother.  I did the same thing when my PCP schedule me to see neurologist but i was going ot have to wait 3 months...I told them I needed to work and couldnt work with the symptoms i was having.  I got in the following week.  Not with the MS specialist like it was going to be...but with a regular neuro...who did lumbar puncture and started me on solumedrol.
  I had lumbar punctures which showed elevated proteins but no bands 12 yrs prior to my first attack.  But the last one did show the bands.  I'm sorry you are scared and having to go through this.  My thoughts are with you.

[srohrer]

Thanks, Tammy.

If I knew for sure that the lumbar puncture would tell me what is wrong with me, I would do it.....reluctantly, but I would do it.  I can tollerate needles, just not in my back!

Guess I'll wait to see what these other doctors say and make a decision then.  :)