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Old 01-30-2010, 05:29 PM   #1
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Question Nystagmus

My first clearly presenting symptom of MS was vertigo and nystagmus in 2001. Now a week ago the vertigo re-presented itself and has just tapered to nystagmus only. I am getting real frustrated though. My business is working on the computer and focusing on my work is rather important. I have had problems with keeping my eyes focused for a while, but the nystagmus has gotten really bad now. My annual eye doctor appointment with an opthamologist is in three weeks. Do I wait to see him or should I try to see a neuro-opthamologist before then? Do you think the months I have had trouble focusing my eyes at times was a prelude to the nystagmus? Any hints or guidance from your experiences would be greatly appreciated.

 
Old 01-30-2010, 06:20 PM   #2
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Re: Nystagmus

Hi Deer,

I had a very severe exacerbation in April 2008. Nystagmus was one of the worst symptoms-I had others, but not being able to focus was horrible. It was from a brainstem lesion. Have you had an MRI which has explained the nystagmus?

I began seeing an MS specialist at that point-it's a very long story, but I now know I should have been doing that all along. He tried to treat the nystagmus with many different drugs, including baclofen ( which I can't take due to side effects), namenda, zofran and others, which did absolutely nothing. He eventually recommended I see a neuro-opthamologist, which I did, but he really didn't have anything different to offer. My husband did some searching and found a very small study where 4-AP helped with nystagmus. My MS Dr. agreed to prescribe it and it did help. That drug was recently approved to help improve walking in MS patients as Ampyra. I would keep your appoinment with your opthamologist, but in the interiim try to get an appointment with a neuro-opthamologist. Maybe, you could call your opthamologist to get their opinion or a recommendation. Hopefully, you'll have a better experience.

It began clearing up after about 9 months. I started on Tysabri in July 2008. My MS Dr. is convinced that helped shrink the lesion. The nystagmus is greatly improved, but still is present. I think it was a combination of the two drugs.

I didn't have any focusing issues before this exacerbation. Maybe someone else has had a different experience. I've had vertigo since March 2009. It's improved somewhat, but still happens when I lay flat or face bright sunlight.

Jenna

 
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Old 01-30-2010, 08:19 PM   #3
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Re: Nystagmus

Quote:
Originally Posted by deer1 View Post
My annual eye doctor appointment with an opthamologist is in three weeks. Do I wait to see him or should I try to see a neuro-opthamologist before then? Do you think the months I have had trouble focusing my eyes at times was a prelude to the nystagmus? Any hints or guidance from your experiences would be greatly appreciated.

Life with MS is filled with twists and turns and the ever noted "what if's". The hints of focusing difficulty may certainly have been a prelude- or not. For you, it might have been a prelude, but for someone else, it might be nothing at all. What I have learned from my MS is that nothing surprises me and that I refuse to let MS control who I am or what I do. When the "what if's" hit you, the first thing you need to do is to avoid blaming yourself for what you are going through. Many MSers will blame themselves for their symptom-du jour.

I would certainly try to see a neuro-opthamologist because they are in the best position to delve into your current problem. If you are seeing them when you are presenting, I often think that they will show more concern. MS is fickle in that it shows up when you are not at the doctor! LOL, well my MS always "hid" when I went to the neuro, though not any more.

Your regular eye doctor would likely refer you on to the specialist any way. You will still need to see your regular eye doctor. If you cannot get an appointment with the neuro-op., your regular eye doctor might be able to refer you ahead of time. I would certainly ask! BTW, welcome to the boards.
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Old 01-30-2010, 09:02 PM   #4
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Re: Nystagmus

I see you are getting more feedback from starting this thread! Good for you! And, again, welcome to the boards...

I feel the same way- that your eyes are too important to wait for an annual appointment and YES you should attempt to see a NeuroOpthamologist as soon as you can. Many of us started out with eye issues, which were either referred to a specialist or diagnosed by an Eye specialist..and turned out to have MS diagnosises.

Are you seeing a Neurologist?? This is something worthy of giving him a call about, if you have one, and definately worth making an appointment with one- if you dont already have one to go to. Look for a Neuro who either specializes in MS, or at least has a large MS practice. You do NOT want a neuro who has a speciality in Parkinsons or Migranes...

I wish you luck and health....please let us know how youre doing...
Nikki
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Old 01-31-2010, 06:45 AM   #5
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Re: Nystagmus

You all are awesome! Thank you for your responses. Yes, I do have a neurologist,, but he has a lousy staff. I called last Monday and told the medical assistant about the vertigo and all and about prescription refills. I kept waiting for a reply back. Finally Thursday I found out the prescription refills weren't even taken care of, let alone calling me back. I left another message. I can never get straight through to talk to anyone. Friday, my husband got ticked off and called them, talked to the office manager and I got a call from the medical assistant within an hour. hmmmm.... Anyway, she said she "mentioned" to the doc about the vertigo, ordered my meds, then later it came out she just got my Tysabri ordered for the next year and didn't do anything about the scripts I had called about. In my mind, I'm thinking she never said anything to the doc or did anything regarding my call I made last Monday or the follow up on Thursday. So she said she would call me back regarding all that stuff. Guess what?!?! I still have not heard back. My husband has a dental appointment early Monday and if I haven't heard from the doc's office he is taking me there and we will not leave until I either see the neuro opthamologist or my neurologist. It's a shame I've heard more from you all and gotten more info than I have from my doctor's office. Hopefully I can give you more uplifting info tomorrow. Thanks again!

 
Old 01-31-2010, 09:45 AM   #6
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Re: Nystagmus

Hi Deer! YOU GO GIRL! Honestly, its a shame that we have to do this, but its an important lesson to learn now- be your own advocate! If you have to call the doctors office every hour or sit there until you are seen- do what you have to do....and by the way, I highly suggest that you also mention that if this is the kind of care you can expect in the future- there are OTHER Neurologists you can call and be seen by....usually, that will shake them up!

Its unfortunate, but things like MS or even Eye issues- really are THAT important that a few days of waiting, can result in permenant issues- numbness, blindness, even losing the ability to walk- isnt something any of us wants to "chance". You have to have a Neuro who calls you back promptly! In my Neuros office, Im on a first name basis with the girl who answers the phone, the nurse and even the billing person! Trust me, if I need something and get a machine, I hang up, call back and explain what I need to someone...and follow up in 2 hours if I havent gotten a call back from either the doctor or his nurse! Yes, I sound pushy.....but in my work life, I deal with doctors and nurses all day long- Ive learned, that if you dont want to be a slip in a stack of call backs, you have to be a person - not a "message". So, kudos for your husband for taking control. Hes not wrong to be pushy either. Good to know he loves you enough to do it!

Keep us posted...and try not to worry- answers are coming!
Nikki
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Old 02-03-2010, 06:19 AM   #7
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Re: Nystagmus

You all are the best. And Nikki, I know you have been a guardian angel for a lot of people of this board. It is a wonderful calling that you are fulfilling. I too have been known at the doc's office to be a little pushy and have no problem calling the office manager if I don't get responded back to. I guess this time around I was feeling so crummy I just couldn't get my "***** mode" going. But things were getting worse and you all gave me a reality check and got my butt back in motion. THANKS! I did see the doc on Monday and it was established that I was having a good old fashion relapse. And we got me going on the steroids. He also has me taking low dose diazapam to calm down the twitchy eye motion from the nystagmus. It also helps me sleep through the steroids. Ha! I will check in here from time to time and see if I can repay the kindness and help others. For now, take care my friends, and look for the funny things in life and laugh heartily.

 
Old 02-03-2010, 02:32 PM   #8
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Re: Nystagmus

Best of the best to you Deer!!! Speedy recovery from this attack!
Nikki
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