Re: Re: Optical Neuropathy? What little I know!

[Guest guest]

Betania and Ruth,

I can only tell you what I've experienced.

First Betania: I didn't know anything was wrong until I visited a physical

therapist because I was having balance issues. She spent most of our time

working on my eyes, not my gait or my leg strength. She said I had a problem

with the 5th cranial nerve and although it probably didn't explain my balance

problem completely, it certainly wasn't helping! Basically, when I focused on

something moving from side to side (like her finger), my eyes follow okay at

first, then they wouldn't move perfectly together. Also, I had a couple of

episodes of double vision (mirror images one over the other, not side by side).

The PT talked to my neurologist and I was referred to a neuro-ophthalmologist

who confirmed the problem. He said I could get glasses with a slight built-in

prism if the double vision became troublesome. When the double vision happens,

it is very troublesome, but so far it isn't happening very often.

Ruth: I had no symptoms with optical neurapathy. I had a visual fields test and

there was an area where I wasn't seeing well. That test was a year ago. It

wasn't mentioned at all during my six month appointment. Last week, the

technician in the neuro-ophthalmologist's office saw a problem when she was 

looking at the back of my eye through a scope. She dilated my eyes and the

doctor checked them through the scope. He ordered another test that involved a

laser scan of the back of my eye (painless). It confirmed optical neurapathy in

both eyes. As I understand it, this is a thinning of the optic nerve. It is

worse in one eye than the other, but it is plainly an issue in both eyes. The

thinning indicates that the optic nerve is dying. The doctor wouldn't tie this

to CMT or to anything in particular. He said we'd checked for the most obvious

things with a brain MRI that I requested last year. The MRI hadn't shown much,

so he decided to wait six more

months and see if there was a change. He is a frustrating doctor in that he

tells me there's rarely much that can be done for optical neurapathy, so it

doesn't particularly matter what is causing it!

Late last year, I visited a medical center in Atlanta that is supposedly well

known in treating neuromuscular diseases. The neurology visit was less than

worthless, but the neuro-ophthalmologist, who was exceptionally thorough and

very caring, confirmed the 5th cranial nerve problem. She didn't say much about

optical optical neuropathy. She didn't schedule a return visit. She simply sent

a report to my neurologist.

So that is why I was asking this group if anyone knew anything about eye

issues and CMT.

I'm not sure that any of this helps either of you, but that's all I know!

Except I do know, as do each of you, that it is a bit scary when no one seems

to have an idea how all these pieces fit together!!

Jim

[Guest guest]

Hi group,

Back in 1990 the school insisted my son couldn't see. His vision was always

good and he said he could see fine but our eye dr explained with cmt the

eyes get tired too when you're tired. Makes since because my whole life I've

had 20/40 in one eye 20/30 in the other then 20/25 in one 20/30 in the

other and 20/25 in both. Back when I was in my 20's I had an awesome old timer

guy for an eye dr. Saw him once before he retired. I was telling him how

I'd lose or break my glasses as a kid ( on purpose ) He said that was the

best thing I could have done because glasses make your eyes weaker. I eat my

sweet potatoes now ( half a large or a medium ) lightly steamed daily and

have maintained the 20/25 in both eyes for 2 years now. A cup of mashed

sweets have like 51/2 times the rda. Apparently the more it's cooked the higher

the value of beta carotene. And beta carotene is not toxic. I value my eye

sight dearly with cmt! I'd hate to be blind or even have any trouble

seeing with this darn disease. That would not be fun!

[Guest guest]

THANK YOU FOR TAKING THE TIME TO ANSWER. YOU ARE RIGHT, ALL THESE COULD BE

FRUSTRATING AND A LITTLE SCARY.......

AFTER KNOWING ABOUT HIS EYE PROBLEM, MY BROTHER HAS BEEN DEPRESSED. I REALLY

WISH YOU AND HIM A LOT OF COURAGE AND STRENGTH.