EStevens64
04-16-2005, 01:20 AM
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?
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Dazee2100
04-16-2005, 01:23 AM
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 :jester:
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 :jester:
Jewel2
04-16-2005, 01:27 AM
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
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
04-16-2005, 02:04 AM
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
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, 11:27 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
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
Jewel2
04-16-2005, 11:54 AM
Well, I just read over the major websites on Devic's, and you're right - the symptoms of it are very much like my daughter's! As I mentioned in another post, my daughter's lesions are more elongated with some of them being very long, which is apparently common in Devic's. And the CRABs didn't help her, which is supposedly the case with Devic's.
The big problem I see with Devic's is that they say there is usually minimal or no brain lesions. My daughter has a lot of brain lesions that cause problems with her face, swallowing and cognitive function. So I don't know if this would eliminate the possibility of Devic's, or if she could just be atypical.
She has an appt. at the Mayo Clinic on May 23. Perhaps I'll broach the subject with her doctor. I think she's going to be getting new MRIs before she goes. They should be telling.
Very interesting. Thanks for mentioning this.
Take care,
Julie
The big problem I see with Devic's is that they say there is usually minimal or no brain lesions. My daughter has a lot of brain lesions that cause problems with her face, swallowing and cognitive function. So I don't know if this would eliminate the possibility of Devic's, or if she could just be atypical.
She has an appt. at the Mayo Clinic on May 23. Perhaps I'll broach the subject with her doctor. I think she's going to be getting new MRIs before she goes. They should be telling.
Very interesting. Thanks for mentioning this.
Take care,
Julie
EStevens64
04-16-2005, 11:00 PM
You are probably right. I know it is very rare. But the mayo clinic is the one doing most of the research so he probably would have caught it.
EStevens64
04-16-2005, 11:16 PM
I didnt see your final post when I posted the above reply. There is a really good article by a Dr Wingerchuck or something like that. I found it online. Good luck to you and your daughter.