OCT today

[LATW]

I had my OCT today and the news is not good.  I continue to lose vision in my right eye.  My left eye is right on the line.

Loss of vision is a big deal to me.  I could lose use of other things and still keep a positive attitude but the loss of vision seems so isolating.  :(

My MS has been basically in my legs and vision, but now it seems my arms are becoming part of it too.  

I have never had a big attack, besides TN, and come back from it.  Things keep piling on top of each other.

Good thing I am on an antidepressant!

LA

[jensequitur]

Well, to be honest, I think it's SPMS.  I've been experiencing progression without relapses for about two years.  But my neuro hasn't said anything about it... yet.  I go to see her again in two months or so.    

[LATW]

Lulu- This is my new neuro and my eye doctor working together.  

I have had some doubt about my MS being RRMS because from the time I had my first ON till now I have had continual decline.

I am still walking but not without issues.

LA

[rendean]

Hi  LA,

I 'm sorry to hear of your newest development. Losing my vision is second only to having permanent vertigo. I am sending along my best wishes to you and all the others with deteriorating vision issues.

Hugs,
Ren

[anon07072023]

Hi Jen, Does your neuro say that you have RRMS or SPMS?  What do you think - which one do you feel like you are?  I'm sorry if it's SPMS.

[Lulu54]

This is your new neuro, right?  I'm sorry to hear that your vision continues to deteriorate (and the same to the rest of you with this problem).   hang in there, L

[LATW]

I need to get my numbers
LA

[jensequitur]

Hmmm... according to my OCT test, I have 84 microns in the right eye, and 77 in the left.  The chart seems to indicate that it's SPMS...

[jensequitur]

Thanks, Bob!

[COBOB]

Here is a pretty good article that explains how OCT correlates to MRI brain atrophy and axonal loss.

http://www.jhasin.com/files/articlefiles/pdf/ASM_9_2_p48_52.pdf

Bob

[jensequitur]

I'm starting to wonder if there's a way to correlate RNFL loss with amount of atrophy... I guess I'll have to ask at my next appointment.

[Sparkysarah]

I really feel for you and as you say loss of vision is a huge thing.  It makes one value your senses so greatly when one is threatened with their deterioration. I am also glad that you have an understanding neuro.

Thinking of you

Love Sarah x

[LATW]

Nice to have our brains falling into a black hole!  :[

[jensequitur]

I'm so glad you have a neuro with some sense.  It's pretty obvious that we're both having a little atrophy of the noggin.  Although how we treat that, I don't know, and my neuro didn't really have any suggestions.

[Ojibajo]

I completely understand your pain. I think I have semi-accepted any physical disability that I may have coming at me accept the potential loss of vision or hearing. So far it does not seem to have attacked my optic never but I am so scared.

Currently I just have leg issues and left side issues.

[LATW]

I went back and looked at your chart and now I know what you were asking about.

My right eye is in the red and my left eye is in the green area.  

Although my left eye is just right on the line in areas.  

I did not notice my numbers.

I asked my eye doctor about brain atrophy and he said yes that this kind of loss can show atrophy.  :(

I am one of those people without many visible lesions.  

I do have a neuro who believes in invisible lesions.  

LA

[anon07072023]

I know what you mean. My legs and eyes bother me a lot, too.  And it seems like since it began, it has never went away.  It seems like my vision is alway blurry (especially in the morning).

I tried to get in to see the neuro-ophthalmologist in Denver, since there aren't any here in Colorado Springs, but they said I need a referral.  I'm going to see my MS neuro on 8 April, I hope he'll give me a referral.  It seems with my luck, he probably won't.

I hope your vision doesn't continue to get worse.
-Kelly  

[LATW]

My right eye is in the red and I believe my left was yellow also.  

I should have asked for a copy but I know for sure my right eye was red.

LA

[jensequitur]

Do you remember what your RNFL thickness was in both eyes?  I just had one, and I'm in the red in one eye, and in yellow on the other.

[LATW]

Thank you, ess.  :)

[LATW]

Thanks Bob,

That is a huge deal for you!  

I would be interested in hearing how that appointment goes.  I hope he has some good answers for you.

I know there is neuro-opht in my area.  I may need to make an appointment with him.  

LA

[essdipity]

I'm so sorry, LA. I really am.

I will be thinking of you and sending comforting thoughts your way.

ess

[COBOB]

LA,

I think I can relate.  I have an appointment on the 24th with an Ophthalmologist who specializes in neuro and hard to correct vision issues.

As a Systems Architect, my vision is important to my career.

Hang in there,

Bob