Optic Neuritis in both eyes - Multiple Sclerosis Message Board

EStevens64 · 04-15-2005, 10:20 PM

I was wondering how may people here have optic neuritis in both eyes. After having it diagnosed in my left eye my neuro seemed to not take me seriously when I told him I suspected it to be in my right eye as well. Finally he said I needed to go back to the dr that diagnosed my left eye to make a comparison to the first exam. He called my neuro while I was still in the examing room by phone and told him I did have it in my right eye too. Is it really that rare?

Dazee2100 · 04-15-2005, 10:23 PM

I have had it in both eyes 4 times.

Not sure that it's rare...I mean my eye doc checked both eyes and said "yep it's in both"

Are you doing steroids?

"sometimes I get so weird, I even scare myself!"

Dazee2100

Jewel2 · 04-15-2005, 10:27 PM

My daughter usually gets it in both eyes at the same time, including total blindness in both eyes. Sometimes one eye is worse than the other, but it has definitely affected both eyes. Steroids help it a lot.

I don't think it's that rare. I've heard of many people with both eyes affected. Maybe your neuro hasn't seen it that much...?

Take care,
Julie

EStevens64 · 04-15-2005, 11:04 PM

Jewel,

In keeping with this post and the following post regarding work and MS;

"In answer to your question, the symptoms leading up to this were total paralysis from the neck down and other partial paralysis, total blindness several times, vertigo so bad we had to anchor her down or she would roll uncontrollably, continual fatigue. These are the main things. They looked a lot at the frequency of her attacks which would prevent her from having consistent attendance at a job. She basically has two major new exacerbations and two minor new ones per year. Each remission leaves her with more permanent deficit. This was all clearly recorded in her medical records"

Have you looked in to Devic's? That is what they suspected I had and your daughter certainly fits the symptoms. It is a variant of MS. The clinical term is Optica Neuromyelitis. You really should look into it. I think you will be surprised how much it fits your daughters situation. The Mayo clinic is doing alot of research on it and it states that alot of people are misdiagnosed with MS. The significant sign on the MRI is long lesions that extend 3 or more segments or something like that. Please check into it. It is treated differently. Usually by plasma exchange. To be honest I was very relieved when they said that my mri didnt show it. It seems to be much more debilitating (sp?)

Erin

Jewel2 · 04-16-2005, 08:27 AM

Hi Erin,
Thanks for the info. I've never heard of Devic's, but will check it out. My daughter's neuro is the chief neurologist and MS specialist at the Mayo Clinic. I would think that he would have caught that, but you never know!

Thanks again,
Julie