I apologize for just popping in here, but I've been doing some unfortunate internet research while I'm doing through some testing. About six months ago I developed double vision. At the time it was only first thing in the morning and again in the evening when I got tired. I'm 33, work full time and have three children, so being busy, I thought nothing of it as it cleared up as the day went on. About a week ago, the double vision got much more severe and lasts almost all day. I can see okay if I only use one eye and cover the other one. Driving was scarey and I'm now carpooling.

When I went into the eye doctor, the first thing he said was "You have a droopy eyelid!" I have on and off for years, only noticable when I"m tired. My husband jokingly calls it my "squinty eye"

No other symptoms really, I get tired but I drink a lot of coffee. During PMS I get exceptionally tired, but I can function.

The eye doctor did several tests on me and is referring me to a neurologist. I met with my PCP and she ordered some bloodwork to look for deficencies but nothing was found. I have an MRI tomorrow and a neurologist appointment on Monday.

Do people with MG have the droopy eyelid for awhile before diagnosis, or does it come on suddenly? Again, I'm sorry for just popping on here, just curious.

You poped into the right place. Welcome aboard

These are all Symptoms of MG. Mine started with double vision. My eye doctor said I had "dry eye" just put drops in and I would be fine. What A joke. Went to Neuro who did MG bloodwork along with bunch of other tests. He came up empty. He then referred me to a Neuro-opto and they examined my eyes about 2 hours then he came in and said "you have MG, I don't care what the tests show" within a year my tests started showing positive. All that being said I suggest you see a Neuro-opto. I have gone through 4 Neuro's before I found one I trust and knew what he was talking about. This is a very tough disease to figure out even for the doctors but they would never admit it.

Hi, and welcome. You may or may not have MG, but if you do, this isn't an unusual way for it to start. I've heard this story a lot on this forum: a drooping eyelid sometimes for years that no one thought anything of, and then some double vision on and off. Some people never have anything but eye symptoms.

I'm glad you're going to a neurologist. He will give you a blood test for MG. If that comes back positive, it's all you need for a diagnosis. If it comes back negative, there's still a chance you have MG. He should then order a special nerve test called a Single Fiber EMG (SFEMG).

Please feel free to ask questions here! We've all been through the diagnosis process (some of us are still in it). It can be very emotionally stressful. We'd love to be able to help.

Abby

Welcome!
I had the droopy eyelid, only in the evening when especially tired for years. I have been accused of giving people "that look" because the opposite eyebrow arches much higher than the other one at certain times.
I am also going through the diagnosis process, but neuro seems to think I have MG.
I have not had any double vision except for when I try to watch TV while laying down.
Hope you get it all figure out right away.
Linda

Welcome!

Everyone else has already said it all. Good luck with neuro apt. In my case, neuro scheduled a bunch of tests at my first visit - even though I was given a 'clincal' diagnosis of MG right then and there! (I had no dbl vision - but did have ptosis, tiredness, and heavy limbs with activity.)

CAT scan thoracic cavity
MRI brain
TONS of vials of blood for an incredible number of tests
PFT - pulmonary function test

I passed all the tests - nothing conclusive found.

So then there were NCV, EMG, and SFEMG tests ( and even an EEG! because my eyes would 'jitter' / roll for brief moments when I was tired!)

Now I understand the reasons for (most all) the tests...but then I only knew I was pretty freaked out! Just know that they are eliminating stuff at the same time they are considering stuff for your dx.

Once all the nerve tests were back...I had passed them too!! - though the SFEMG was described as 'borderline'. So after all that, my neuro went with the clinical dx of MG. Only after finding this forum have I realized how unusual it is to find a neuro who is willing to think objectively beyond the test results and actually render and treat with only a clinical dx.

Feel free to ask any questions and/or vent about your experiences and you journey through this ... folks here have tons (and wide ranging) experience!!

Thank you for the welcome and the information. = ) I'm not looking forward to all the testing and medical bills that follow, but such is life. Praying for a caring and thorough neuologist.

Positives, I'm enjoying time with a friend to car pool with since I'm having a hard time seeing while driving (I have a long commute and it's a long ways to drive with one hand covering your eye....)

Thank you.

There are several suggestions here for fixing glasses for double vision. What I did was cover one lens with black eletrical tape. Another suggestion was covering one lens with the blurrer scotch tape. The kids would stare at me with the black tape.
Mike

My MG was diagnosed at the age of 31 and am now 70. Diagnosis took over a year because medicine is indeed a practice. One Dr. diagnosed me as having contracted botulism. Started out with Mestinon, then, after a number of years we tried predisone for 4 years. This was a complete disaster. Terible mood swings and astounding weight gain, and not much improvement in the MG symtoms. Then I tried Imuran, and concluded that the long term side effects were worse than MG.
I had a pair of glasses with a ptosis ladder attached which would hold open my eyelids and used tears to prevent dry eye but that solution left much to be desired.
I learned to do many things with one eye closed, thus eliminating the eye patch or the opaque lens in glasses.
Much of the double vision was temporary rectified with stick on prisoms which are available in varying strengths. This solution should be presented to your opthamologist. After finding the prisoms that solved most of the double vision problems the lenses in my glasses were changed and the prisom ground into the lens.
Then the ptosis. After about 35 years my neurologist suggested that we again visit the eyelid elevation again. After finding a opthomologic plastic surgeon one my left eyelid was modified. It was the best thing I could have done. The right eye was done 2 months later and now my eyes look almost normal, but one will droop a bit if I get really tired. They used to be almost closed at times.
So am sticking to my Mestinon, at times Mestinon Timespan, and hopefully no more experminentation. This seems to be the best I could do im my situation.

Sorry to interrupt the discussion here...but I need to know if anyone else feels that their life is out of control? I was diagnosed with MG 18 months ago...started with droopy eye and one afternoon was hit with the double vision. Went immediately to hospital where I had the definitive tinsilon test twice and all the blood tests. I now take two 60 mg mestinon tablets 5times daily (10total) and 20 mg prednisone every other day....and had a thymectomy. My physical symptoms are not my biggest concern...the meds have got those regulated. BUT my emotions are all over the place. Things that normally don't bother me can set me off...I can feel it coming but can't stop my reaction...it's just not who I am. Are the meds the problem? Anybody tried acupuncture to replace some of the meds?

Hi. I don't have answers for you, but just a couple of quick pieces of information. First: Prednisone can cause the emotional symptoms you describe; but second, it is extremely important that you don't stop taking it abruptly.

I don't know if it's the Prednisone that's making you feel like this. It could be, or it could be something else. I believe all MG patients should be tested for Graves disease, which sometimes comes along with MG. Graves causes your thyroid to produce too much hormone, which can make you feel the way you describe. It can be diagnosed by a blood test.

Abby