Crossed-Eyes Do they get better?

[Asbeck]

My optic nerves have not been badly hurt. I am not blind. But I have a number of issues with my eyes. Some posts on here seem to imply that with increased prednisone certain eye issues get better. (I understand that the death of the optic nerve does not get better.) I have 6th Cranial Nerve Palsy and regular diploma, all in the right eye which also turns in toward my nose. I guess that regular diploma is the eyes crossing along the same horizontal line instead of seeing a complete separate picture out of each eye, up and down as happens when the 6th nerve has palsy. There is a very slight possibility that I forgot my Pred 3 mornings ago. Yesterday morning the eyes were so weird that I had to wear a patch just to function. I also had a splitting headache. I'm sure that I took the pred that morning, and these symptoms got better as the day went on. I took the pred this morning and I'm pretty good. However, I'm always somewhat "cross-eyed," even though I have prisms etc. My right eye sort of turns off. I sometimes can't see things that are in the center of what should be my vision. There is no blackness or blurry-ness. My brain makes a beautiful, complete picture, just without an item which happens to be there directly in front of me. (I think that this has something to do with the right eye "turning off." Are the suggestions on here that an increase in pred might make my eyes less cross-eyed? I take 8 mg. Around late Jan. I was at 7 mg pred. I had a lot of stress. I started having eye issues-some sort of symptom correlative to a migraine headache. (This is one of my ongoing, occasional symptoms.) I increased the pred to about 9.5 and reduced .5 every 2 or 3 weeks and steadied at 8. I have been on 8 for about a month. I don't feel sufficiently well every day to reduce down from 8 mg. I had thought that if you had 6th Cranial Nerve Palsy, then you were sunk and stuck with that condition. However, it certainly does seem that on certain days my ability to navigate through the crossed-eyes is better than others. Do some people get a little better in this regard with more prednisone? (I have had brain scans. Somehow they can see the 6th Cranial Nerve Palsy on these, and the eye doctor can as well when my eyes are dilated.)

[Celtic PMRGCAuk volunteer]

Asbeck, it sounds like quite a complex issue that you are experiencing with your eyes and I'm sorry but I don't think many of us will have the necessary experience to offer you advice. I think you need to consult an expert in ophthalmology and I hope s/he will be able to reassure you and answer your questions.

[DorsetLady PMRGCAuk volunteer]

Hi Asbeck,

Sorry can't help you really.

Have to say my good eye (lost one due to GCA late diagnosis in 2012) gives me problems on some days. I think a myriad of things can affect it, weather, fatigue, over use, illness and Pred sometime.

If you have two good eyes you probably don't notice the affects these things have as much as those of us who have some sort of problem.

I assume you are regularly checked by your local eye dept at hospital, might be an idea to ask for an appointment to discuss just to put your mind at rest.

[Asbeck in reply to DorsetLady]

Thanks DorsetLady. I have followed you religiously. I have an appointment with my neuro-ophthalmologist in Monday. He's not a talker, but I'll ask him then. Even though he doesn't talk he does seem to do things. He did 2 MRIs of my brain to try to find a "reason" for the problem. And he said that when the eye "settles down" he will have it operated on to keep it from turning in toward the nose. You're correct the point is that I do have two good eyes. As you know better than anybody this is a tremendous gift. I describe it as the right eye being "wacky." There are worse things. I hate to increase the Pred. But at some point I might try to increase from 8 mg to something greater and see if this helps. It seems as if this disease is sort of a try and see how much Pred is enough-disease.

[DorsetLady PMRGCAuk volunteer in reply to Asbeck]

Unfortunately it is a bit like that - and everybody is different. The only thing you can do most of the time is listen to you body and react accordingly. As you get further along you do that almost instinctively.

Good luck next week

[Asbeck in reply to DorsetLady]

NRR (No Reply Required) Thank you Dorset Lady. I was diagnosed 2.5 years ago, after 7 months of Hades (like you, having it but without knowing it). I had thought that I had a terrible sinus infection and had gone to an ear, nose & throat guy, who sometimes gave me "bursts of steroids" (Pred). Saved my sight. Now I'm getting pretty good at identifying bad adrenal days vs bad GCA days. I know that if I get PMR, then I need more Pred because the GCA is going to flair. It's the eyes that get my attention. And they get the attention of my eye doctors. So all is good--2 good eyes. Thanks. You are always in my prayers. As you have said, it was such a short time enduring innocuous symptoms, and the penalty was the loss of sight in an eye. You are why I'm a little crazy about the symptoms in my eyes. Thank you for helping all of us!

[DorsetLady PMRGCAuk volunteer in reply to Asbeck]

Thanks. It's why I'm a little crazy about others when they mention eye 'problems'.

I know I'm very lucky in that I have one good eye, and the lack of the other one doesn't hamper me much to be honest. Occassionally I do get a bit cross when I can't do jobs that involve fiddly little things.

One good thing, it means I don't worry about the dust or the spiders in dark corners. Not that I ever did worry about the dust!

Take care.

[Asbeck in reply to DorsetLady]

Some little bit of good--not worrying about the dust! I would be very, very cross without both eyes being able to help me to do things. You are a star.