Hi Abby, evidently the LE can be tested clinically cuz sev'l of my neuros ruled it out early on & it hasn't been discussed since...so far do not have dry eye syndrome or dry mouth...only one neuro saw ptosis which he said is mild, others say no...interesting point 'bout CMS, maybe, as a teen was dx with double vision, blind in my right eye due to suppression by the left, & the optometrist (not an MD)worked with me for 5yrs to correct it & was successful, tho I still can do strange things with vision...hindsight is 20:20....

Dottie

I was diagnosed with MG in October 2012 and have been lurking around this site for awhile. I did not intend to write so much but once I started I could not stop!

My first symptoms were a left drooping eyelid - noticed on my driver’s license and fatigue. Since drooping eyelids run in the family I just figured it was getting to be time to get the young and beautiful look The left eyelid drooping was very distracting.. The eye doctor asked about muscle weakness which I denied. So both of the eyelids were lifted. 2 weeks later when I went to have the stitches removed my left eyelid was significantly lower than my right eye (a lot worse than it was before surgery, I had the surgery with a local and did not feel stressed I've wondered if this was a "stress" reaction to the surgery??) - in a few days another surgery was done to tighten the muscle.

I then went to my neurologist and he checked me out and did an antibody test and what I think was the SFEMG - it was not like any of my previous EMGs. All tests were negative but he said that it could be the ocular form of MG and started me on Mestonin that was in October. It was working ok until recently (60mg 3x a day) Nov to Jan was hell. I was very fatigued and very depressed and did not know which was the cause and which was the effect. I started reading more about MG and discovered this website and realized I had been "selective" in my reading - I guess the word DENIAL is appropriate. My psychiatrist upped my antidepressant. I felt much better and less fatigued after the increase of the antidepressant.

However, my eyelid started drooping again (Having eyelid surgery is not a cure for droopy eyelids.) I began noticing what I thought was difficulty in swallowing in Feb. I saw my neuro doctor again and he said my ocular MG was tracking like it was going to the generalized form. I have had another battery of antibody tests and a modified barium swallow - the barium swallow did show that I was having a slight problem. I am still waiting for my antibody results.

I have the best neurologist in town, he is very kind and he listens and I am very satisfied with his care. He hasn't adjusted the meds yet but I think he is going to have me see some other specialists. I am comfortable being sero negative at this stage in the game because I feel we have the diagnosis. I have already come to terms that this is the "new normal" for me.

I no longer go out and try to do 20 things at one time, now I might do five and sometimes I say the heck with it all and go home after 1 or 2 . If do not feel like doing something - I don't do it. I feel lucky that I have not developed double vision. I, also, feel fortunate to have developed this late in life - I will be 70 in May. But as a retired nurse I never dreamed that I would have MG! In almost 40 years of nursing I only took care of one patient with MG. I have a lot of questions and I am very happy to have found this forum. I already believe that you have already helped me a lot. Mary Ann

Sorry I'm a little slow in response, life is a little too busy sometimes. = ) My neuro muscular specialist does want me to get a consult and have eye surgery next, EMG was normal but he says I do show some fatiguable weaknesses. However since no treatment is working on my double vision, he thinks I should have eye muscle surgery asap. I haven't heard of anyone with MG having eye surgery to strengthen the muscles, have any of you?

Went back to the neuro opthomologist and he said I should at least have the consult with the eye surgeon and that it doesn't mean I do not have MG, just that no treatment is working on the DV. He also sent a note to the neuro muscular specialist about if he should do the SFEMG on me, just like several of you mentioned. So we shall see from here.

Thank you for all your responses. I'm thinking several of you feel in the same boat, alone in the health problems that we have, confused and scared, yet here we are not alone. = )

It took me 1 year to get rid of the double vision. Not sure if it was the Prednisone or IVIG treatments.

Initially, I had a blepharoplasty on my upper eyelids because we thought my eyelid was drooping because it runs in my family. In the blepharoplasty they remove tissue from the eyelid. When the left eye was drooping even more after the surgery (it was 3-4 millimeters lower than the right upper eyelid) she went in and did what she called a "tuck " on the left upper eyelid.

According to her she removed the membrane from the l upper eyelid muscle that helps to keep the eye open and reattached it to the muscle and made the eye muscle tighter. I seemed to help for a while . My neuro started me on Mestinon 60 3x a day after that but the eyelid is drooping again.

Since he is reevaluating me I will have to see what the next step is but I do not think I will have eye surgery again. If they recommend surgery ask them to describe what they are going to do and whether patients have a recurrence of the drooping and how long before it occurs. I expected to look young and beautiful and we slightly missed that goal! MA