[timbrannan]

I'm very happy to have found this site and hoping someone on here may have the same problem I am experiencing and maybe will be able to give me some advice. I'll try to be short and to the point. In Sept. 2014 I noticed my sight was a little blurred and went to my eye doctor (I wear bifocals) and she sent me immediately to Emory Eye Center. In the course of a few days, my right eye settled into the right corner of my eye. With effort I can move it to the middle, but nothing past the middle of the socket towards my nose. They call it INO. My eyes do not track together because of this so everything is blurred and double and triple vision. I wear a patch so I can see (and not scare people). So, in the last six months, I have seen three neuro opthos, and am now seeing a neuro. I have had three MRIs and a T3 MRI, an MRA, an EMG and I am scheduled for a single fiber EMG this coming Tuesday. I had a biopsy on the muscle behind the eye to ensure no cancer or any other problems showed up through this test. I have had ten or more blood tests for probably everything that it could possibly be, and everything is negative. The neurologist was/is convinced I have MS even though no lesions show up in the MRI. My neuro-optho still thinks that it is MG. They put me on Mestinon for two weeks and it did nothing for my eye or improve my stamina or strength at all (just trips to the bathroom side effects). At this point they have run out of tests and are not sure what is wrong (the EMG next week might show something) so they will probably try some kind of steroid treatment - IV or pills - to see if that might help my eye work properly again. Treating without a diagnosis basically. I am just wondering, hoping, that someone else out there might have this same eye problem and what you found out about it. They mention surgery to correct the eye somewhat and then they can fit me with special lens glasses to see. I am so frustrated and depressed - what caused this and can't anyone figure it out and fix it?? I trust the doctors at Emory and feel as though they have done everything to try and figure it out - but I can't be the first person to have an eye go haywire with no explanation. Thanks for any input. Tim

[suev]

Welcome to the forum Tim!

Very sorry for what you are going through. I have not heard of MG causing a condition as severe as yours - but I am certainly not saying it isn't possible. I just don't know. Perhaps someone else will have better info for you. I do hope things improve for you soon.

[imdan]

Originally Posted by timbrannan

I'm very happy to have found this site and hoping someone on here may have the same problem I am experiencing and maybe will be able to give me some advice. I'll try to be short and to the point. In Sept. 2014 I noticed my sight was a little blurred and went to my eye doctor (I wear bifocals) and she sent me immediately to Emory Eye Center. In the course of a few days, my right eye settled into the right corner of my eye. With effort I can move it to the middle, but nothing past the middle of the socket towards my nose. They call it INO. My eyes do not track together because of this so everything is blurred and double and triple vision. I wear a patch so I can see (and not scare people). So, in the last six months, I have seen three neuro opthos, and am now seeing a neuro. I have had three MRIs and a T3 MRI, an MRA, an EMG and I am scheduled for a single fiber EMG this coming Tuesday. I had a biopsy on the muscle behind the eye to ensure no cancer or any other problems showed up through this test. I have had ten or more blood tests for probably everything that it could possibly be, and everything is negative. The neurologist was/is convinced I have MS even though no lesions show up in the MRI. My neuro-optho still thinks that it is MG. They put me on Mestinon for two weeks and it did nothing for my eye or improve my stamina or strength at all (just trips to the bathroom side effects). At this point they have run out of tests and are not sure what is wrong (the EMG next week might show something) so they will probably try some kind of steroid treatment - IV or pills - to see if that might help my eye work properly again. Treating without a diagnosis basically. I am just wondering, hoping, that someone else out there might have this same eye problem and what you found out about it. They mention surgery to correct the eye somewhat and then they can fit me with special lens glasses to see. I am so frustrated and depressed - what caused this and can't anyone figure it out and fix it?? I trust the doctors at Emory and feel as though they have done everything to try and figure it out - but I can't be the first person to have an eye go haywire with no explanation. Thanks for any input. Tim

Ok, for what its worth, I will post this although I find no where to confrm the connection.

I was fighting with the double vision a few years, mestenon, prednazone, 11 plasma pharisees, then again 5 more, numerous exams and medications couldn't remove it... finally retuximab/retuxin infusion, yet still double vision.

I had noticed from time to time it would go away for a few hours, even a day or so, and begin taking notes what was different..after a year and a half, one common denominator was I slowed or temp stopped tobacco use/ nicotine..

in the fall of last year, i finally cold turkey quit using all tobacco/ nicotine....
within a week my double vision was gone, has never came back, and even my prescription pre dbl vision changed for the better...
and yes I am positive for MG no question about it...

I tell my docs and they just shrug...

[timbrannan]

Hi. I had the single fiber EMG test yesterday at Emory and the two doctors involved said that the test was normal (20 out of 22 tests) so they are saying that my problem is probably not MG. Looking at my eye and hearing my symptoms made them pretty sure it was MG, but after the test, they were convinced it isn't. Since the 3T MRI was normal last week - the neuro said afterwards that it doesn't look like MS either, as a lesion would have been detected in the 5 months since I have had this issue. So: my eye is still stuck on the right side of my socket and not moving and no one seems to know what else to do. One of the new doctors yesterday performing the EMG test said that there are some tests they can do to see if it could be a muscular problem. I see my neuro next week to see what he thinks and what might be next. I wish someone could figure out what has happened so they can treat it - right now there is no treatment since no one has figured out what might have caused my eye to do this. Maybe I should post something in the general area to see if anyone has this problem not related to MG? Thanks for the views and replies. I'm really frustrated and very depressed about it all. Thx. Tim

[pingpongman]

I suggest a Neuro-Opt. He DX'ed my MG when no one else could.
Mike