Thread: Nystagmus
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Old 01-30-2010, 07:20 PM   #2
Join Date: Oct 2006
Location: NJ
Posts: 54
jb10 HB User
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.