Welcome! I'm fairly new to the group and new to MG so can't offer a lot in terms of experience. There are lots of very knowledgeable, supportive people here, so hopefully others will respond.

My neuro also told me that the antibody tests are only positive in about 50% of people with ocular myasthenia. Mine were negative. In fact, all my tests were negative years ago, but I'm currently in the process of being reevaluated. Did you have other tests that were positive for myasthenia?

I completely understand your frustration with the double vision. It sounds like for some people mestinon can improve or completely alleviate the double vision, but for many others it is the first option before other drugs are added. I'm at that point as well. Steroids have been discussed but neuro would like more testing to confirm diagnosis before adding these.

I hope you have a neuro ophth follow up appt. scheduled soon and can get some answers and some relief from the diplopia.

Hugs, :hug:
Cate

I have an apt with my neuro opt in a couple weeks. My doctor has been talking to him and has treated about 15 people with myasthenia gravis and seems to know how to treat it.

The additional tests they did were thumus cat scan which was negative and antibodies were negative. But I had this same thing 15 years ago and comparing notes it was misdiagnosed back then as 4th nerve paulsy. What made him say its myasthenia gravis for sure is the ice on the eye lid test. Measured my ptosis, had me put ice on my eye lid for two minutes then measured it again. The ice helps the nerve transmit the signal to the muscle and opens up the eye lid. After a few minutes it drops down again. He said that they have done tests and the ice test is pretty conclusive.

KJ,
Interesting about your misdiagnosis of nerve palsy. My experience is similar. Initially, they were quite sure my double vision was from MG, but when tests came back negative, then said 4th nerve palsy. I've always felt that was just a default diagnosis. Now eight years later, MG is being looked at again.
I've never had the ice test done, but then I don't have much ptosis.

Good luck to you at your next appt.

Cate

DV
 

My blood tests don't show MG; however after a bad fall - about 2 months later I had DV. Once in awhile at first - now quite often. Doctor wants me to try Pyridostigmine (30 mg) 1x day. Also - an optometrist can give you glasses with prisms which correct DV. I heard Hillary has some. Not sure I want to take the medicine. Anyone have an input please.

Marqui, Pyridostigmine, is not always effective for DV. But it is fast acting and quickly out of the system... so a trial of just 1 x 30 mg, should be no concern at all. If it works, then you need to be taking it every 4 hours.

Prisms can also help with DV. However only if the DV is stable. Since you say that it comes and goes, then it may not be so much help to you. But certainly worth trying.

I began having double vision about six months ago. I saw an Ophthalmologist who diagnosed me with 6th Cranial Nerve Palsy. I had an MRI which was negative other than showing some enlargement in my right inferior rectus eye muscle. She was not inclined to preform a single fiber EMG. Many with Ocular Myasthenia Gravis are seronegative, meaning the typical lab work does not come up positive. I found a neurologist who did preform the SFEMG and put me on Mestinon 30mg. x3/day and to up to 60mg x3/day in 7 days. I am just into my second week at the upper dose and feel some improvement. The only lab work out of range are my IgM and my IgG. I see my neurologist next Thurs. He wanted me to have a CT of the chest to r/o thymus involvement; but I put that off just for now because of the expense. If he feels he cannot go forward in treating me then I will cough it up. I just think it is important to know that Ocular MG is difficult to diagnose, especially in older folks like myself. It is like putting together a 1000 piece puzzle. Even the tension test isn't 100%. I thought the SFEMG would be definitive; but it is just an important tool. I would just say to anyone here, don't stop seeking an answer for yourself. It could be a matter of life or death.

hope this helps
 

I was reading your post and thought this might be of help. My hubby started with 4 months of double vision and positive MG blood test. He was told by the neuro doc that mestinon really only works for the drooping eyelid. He had been successfully treated with CellCept for several years.. it took longer than prednisone to secure the single vision, but has less side effects. He also has weakness in the limbs, eetc.

Catie, I've been taking mestinon since 1970. Mg started for me with drooping eyelids at age 11. The mestinon has done more for my eyelids than the double vision as I've continually experienced problems with my vision for years.:mad: