Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
As for today's appointment. It was due for 9.30 & knowing public hospitals expected it to take a while. It was actually a nightmare & one of the few that I wished I had someone with me.
Started off with the usual check of pupils, trying to read eye chart - again only about 2nd & 3rd row & then those books with all the dots in with numbers in them that I usually breeze through & this time I didn't get many right at all. There were a lot I couldn't even see the number in them at all.
So that showed straight away that I am having trouble with colours, with sight for reading lines & then the pupils didn't follow when the pen moved up & down etc.
Next I waited again & was seen by a different Dr who did even more tests with drops in my eyes, then the contrast dyes in them. My pupils didn't follow where they were supposed to, didn't dilate (or something). He even flicked the eyelids, upper & lower & was able to say eye balls are all ok.
Distance vision, peripheral vision, colour, focus etc etc are all affected.
Anyway, he then got another eye specialist who studies the movement of the eyes to come in & have a look too. He tried to get me to follow the pen etc with the eyes with exactly the same responses. My right eye is only open about 1/8 which is only a crack which makes it very hard.
Anyway in amongst all this they called in the registrar as well to help make decisions etc.
Then they said I need to go to the eye & ear hospital which they said usually takes 2-3 months. I almost freaked at that as it's all happened in about 2-3 weeks & left eye is starting to do the same as the right eye has done, it is flickering a bit too & blurry sometimes.
Anyway, to cut it short the resident got on the phone to the eye & ear hospital & they said I could probably get an appointment in 2-3 weeks. Next thing the resident rang them back & faxed through the paperwork. He came back out with them on the phone to talk to me & they said I can have an appointment this Wednesday at 2pm for the testing & the Dr will see me after that. Current plan is go to work in morning & then make my way from there.
I felt like I was caught up in some kind of whirlwind that went from one thing to another. The Dr's think it could be some kind of nerve damage at the back of the eye/s or else it is something to do with the brain/lesions. Wont know till after Wednesday.
I have gone through the whole range of emotions/feelings & wont know what is going on till after Wednesday. I am pleased that I got an appointment so quickly but scared too as i don't know what it all means as they must have seen something to give me it so soon too.
I didn't go to work after all that, was exhausted mentally, physically, etc. Rang work & they are fine with that.
Started off with the usual check of pupils, trying to read eye chart - again only about 2nd & 3rd row & then those books with all the dots in with numbers in them that I usually breeze through & this time I didn't get many right at all. There were a lot I couldn't even see the number in them at all.
So that showed straight away that I am having trouble with colours, with sight for reading lines & then the pupils didn't follow when the pen moved up & down etc.
Next I waited again & was seen by a different Dr who did even more tests with drops in my eyes, then the contrast dyes in them. My pupils didn't follow where they were supposed to, didn't dilate (or something). He even flicked the eyelids, upper & lower & was able to say eye balls are all ok.
Distance vision, peripheral vision, colour, focus etc etc are all affected.
Anyway, he then got another eye specialist who studies the movement of the eyes to come in & have a look too. He tried to get me to follow the pen etc with the eyes with exactly the same responses. My right eye is only open about 1/8 which is only a crack which makes it very hard.
Anyway in amongst all this they called in the registrar as well to help make decisions etc.
Then they said I need to go to the eye & ear hospital which they said usually takes 2-3 months. I almost freaked at that as it's all happened in about 2-3 weeks & left eye is starting to do the same as the right eye has done, it is flickering a bit too & blurry sometimes.
Anyway, to cut it short the resident got on the phone to the eye & ear hospital & they said I could probably get an appointment in 2-3 weeks. Next thing the resident rang them back & faxed through the paperwork. He came back out with them on the phone to talk to me & they said I can have an appointment this Wednesday at 2pm for the testing & the Dr will see me after that. Current plan is go to work in morning & then make my way from there.
I felt like I was caught up in some kind of whirlwind that went from one thing to another. The Dr's think it could be some kind of nerve damage at the back of the eye/s or else it is something to do with the brain/lesions. Wont know till after Wednesday.
I have gone through the whole range of emotions/feelings & wont know what is going on till after Wednesday. I am pleased that I got an appointment so quickly but scared too as i don't know what it all means as they must have seen something to give me it so soon too.
I didn't go to work after all that, was exhausted mentally, physically, etc. Rang work & they are fine with that.
I called my opthalmologist the middle of January one year, they said they could get me in in early March. I told them "no, I have double vision, particularly at night, and this is a safety issue. I need to be seen sooner."
I was seen in 3 business days (5 days because of a weekend).
I'm glad you managed to get an appt. soon. Sometimes you really have to pressure these medical offices to get them to see you quickly as is the need in your case.
Again, try to stay calm.
Chances are your vision will improve if you are suffering from optical neuritis. It can get better without any treatment at all (in fact there is very little if anything that can be done for optical neuritis).
Take care AusSue and know that many of us here are concerning for you and wish you the very best!
As the shaking subsided, another lesion formed on my optic chiasm causing me to lose sight in my right eye and then my left within a couple of hours of each other. First everything was black, then slowly I could start to make out light and forms.
It was a really bad case of optic neuritis that didn't really clear up for over 6 months. I still have some permanent damage and it was scary as hell. Steroids did not help for me. I had to let it clear up on it's own, but maybe steroids will work for you.
It's scary but it did get better.
I hope you're doing ok and that they will have answers for you tomorrow. Good luck.
I had more tests today, golden something - similar to peripheral tests but different & then a map something (you can tell my brain not working).
Still no definite answers. Think maybe a variation on optic neuritis but want me to see a professor of othamology & neurology to see what he thinks. This is crazy, one dr after another & keep palming me off to different one.
Anyway I told him that what about immidiate care, how was I supposed to live with bad eye sight, I need it to use wheelchair effectively & to fundtion etc. He said he will try to get on to my neurologist as well.
No treatment or help at this stage, just wait again.
Please keep us posted on how things work out. I used to think that eye doctors were bad until I met orthopedic doctors and they are just as bad. Sorry that you got passed around from doc to doc. That is what they do when they don't know what to do. They can't seem to admit they can't figure it out. Just keep trying and keep at it until it gets figured out. We always find an answer as long as we don't give up.
The only treatment I ever had was (over 29 years ago) for Optic neuritis was steroid drops. They was supposed to speed the recovery. And my vision did come back 100%.
But I changed some things in my life. I stopped working on the cathod ray tube computer screens which seemed to bother my eyes. That REALLY helped my eyes. I use the flat screen now and they do not bother my eyes.
Also, eye make-up. I stopped using eye make-up for many years because of my eyes. I started using eye make up about a year ago and it doesn't seem to bother my eyes. So perhaps the formula changed in all those years. So I wonder if there was something in the eye make-up that caused me a problem. Again, my theory of toxins.
Ask to see an eye specialist. Good
Luck and keep us up to date. We CARE!!
Marilyn
All my warmest wishes to you,
EP
"No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death, nor life, nor angels, nor rulers, nor things present, nor things to come, nor powers, nor height, nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord."
Romans 8:38-39
{{{HUGS}}}
At the moment all this has to go on the back burner as had bad news this morning. Husbands Mum passed away in her sleep. She was 93 & in hospital for other problems & has been sick too. Her kidneys were shutting down. Need to put everything on hold for when the funeral is & if we are needed to meet with the rest of the family. I know this isn't ms related but I am on overload here & I know that wont help.
you are in my prayers