Hi all,

First of all that’s for sharing your stories and advice, reading this forum has helped me feel far less alone. I’m in the process of trying to get a diagnosis and am hoping to get some advice from those of you who have been there.

Long story but here goes….

About two and a half years ago when I was 31 years old, I suddenly noticed my right eyelid was dropping out of nowhere. I goggled a bit and read some information about ocular MG and the ice test. I tried the ice test and was really surprised that my lid jumped back into its rightful position.

I went and saw my GP who agreed I had ptosis and she referred me to an ophthalmologist.

On a side note - around the same time I got the ptosis I got all the symptoms of being hypothyroid. Hair turned dry and brittle and started falling out by the handful, my skin became pale and veins showed through, my tongue is swollen and has teeth marks on the side, my periods have become irregular after being clockwork for years, I’m cold, lethargic tired all the time. I’ve only recently had a thyroid blood test and still don’t know what the results are but I seem to have a lot of the symptoms.

When I saw the ophthalmologist two years ago he was completely dismissive of the ptosis and told me that my problem was that my contact lenses were too tight, which is absurd, as I’ve never had any issues with my contacts and had been wearing them for over ten years with no problems. I mentioned the ice test and he sad it was irrelevant.

He sent me to get my antibodies test at the hospital lab regardless and gave me an appointment in three months time.

My optometrist looked at my contacts, he said they seemed fine but he gave me a larger pair yet it made no difference to the ptosis and it makes no difference to the ptosis if I wear glasses instead.

When I returned three months later I was told the appointment was reschedules for yet another three months in the future. Fed up I asked a nurse about the blood test results. They said they had no record of them in my file but she said she’d chase it up and they would post them to me.

I received the results by mail which came back in the borderline / positive range. My dad who is a doctor (and OBG) said that didn’t necessarily mean I had MG but he admitted he didn’t really know how to interrupt it. He also said if I didn’t have limb weakness then it couldn’t be myasthenia. It seemed like he had never heard of having purely OMG.

I took his word for it and went and consulted an eyelid surgeon privately. She told me that it was possible that I had levator damage from contact lens use but it was difficult to say for sure. She said because the ptosis was so variable then surgery wasn’t an option until it became constant. She said she might be able to do something if the ptosis stabilized.

Fast-forward to today and I still have ptosis that is fine in the morning but bad by afternoon and awful at night. I now have ptosis in both eyes although it’s always worse in the right. I also get blurry vision after staring at a computer for a few hours or reading although I’ve never get much double vision.

In the last couple of months I’ve started experiencing limb weakness in my legs and arms. I’ve had a few experiences of walking along and feeling like I’m wading through mud or dragging my legs, which feel heavy like I have concrete shoes, and I’ve had to rest after walking a few blocks.

I also experience this sometimes on stairs. But other days I’m fine and running around with no issues and I wonder if I imagined those previous episodes.

I’ve also had a few bouts of arm weakness. I work in TV and there was one day when I was on a shoot and I was operating a camera hand held and it felt like I couldn’t hold the camera anymore. My arms felt so weak that I couldn’t hold them up I felt like I was going to drop the camera. I had to call someone else do the job for me and everyone looked at me as if I was crazy because the camera wasn’t heavy.

My co ordination is also a bit off. I drop things a lot. Every lid of take of jars gets dropped. My typing is always a few keys off the mark and riddled with errors.

There have been times when I’ve been holding a glass and talking to someone and suddenly out of no wear my grip loosened and it falls on the floor and smashes.

The limb weakness is fairly intermittent and doesn’t cause huge problems in my day-to-day life but the ptosis is the bane of my life. It’s impossible to control my own eyes and eyelids when they are tired.

My job requires me to stare at a screen all day long but my eyelids will droop dramatically after a few hours my vision will blur. For the past year I’ve been breaking up my workday quite a bit to stop the ptosis from looking awful whilst at work but it makes me so ineffective. If I work all day my eyes look awful and people will comment that I look sleepy or that there is something wrong with my eye.

I’ve seen myself on work video and I can see the right eyelid lags behind my left eyelid when I blink or look around. I’ve noticed this from playing footage frame by frame whereas everyone else lids move together in perfect alignment.

After having all these issues I did the ice test again and my eyelids both shot back into position. I started to do some more research and found a lot of sources mentions that OMG was very common in Chinese, Japanese and Koreans and tended to co-exist with thyroiditis and that subsequently the course of their OMG tended to be quite mild. Suddenly I felt like maybe I’d found an answer as I am ethically half Chinese and I seem to have all the thyroid symptoms. Both condition appeared around the same time or within a few month of each other.

I’ve now gone back to see a neurologist through private health insurance to see if he can help. He reordered the antibodies test and gave thyroid test as well. I showed him a picture of my eyes before and after ice but he didn’t really react one way or the other. He said he couldn’t see any eye fatigue on the 30 second up gaze. It takes more than that to tire my eyes if they’re not already exhausted. My ptosis wasn’t too bad that day as I hadn’t been using a computer.

However he did notice some leg weakness. He also sent me to get and EMG and SFEMG. I have no idea what the blood test results were as he’s on holidays and due to upcoming public holidays I’ll have at least two more weeks to wait.

I went and got the EMG and SFEMG this morning at 9am I was freezing cold and well rested so not really optimal conditions for showing muscle fatigue. The doctor doing the EMG said he didn’t see anything that indicated MG.

The SFEMG was done in the left side of my face although I don’t know if I did it right.

So my first question is – Are you supposed to open and close your eyes during the SFEMG?

I kept them closed the whole time because the needle was freaking me out. There were a few times he instructed me to close my eyes but my eyes were already closed. After thinking about it - was I supposed to be blinking as instructed and would that mess up the results?

He said that he had to analyze the data but the initial results he saw didn’t indicate any MG. So now I’m kind of freaking out since a SFEMG is supposed to be so accurate.

My second question is. I was going to post a before an after picture of the ice test on my Ptosis for your opinion but I can't until I have more posts I'll try and do it soon.

My third question is – I know I seem to have some kind of fatigable ptosis that reacts well to ice but if it’s not OMG what else could it be? Would any other kind of Ptosis behave this way?

My fourth question is what was your experience of going from OMG to generalized MG? Did it feel anything like I described?

Fifth question – How do I advocate for myself with neurologist? I feel like they seem quite disbelieving. I’m really worried all the results will come back negative and then I’m stuck with a bunch of symptoms with no solution. If everything comes back negative is it possible my neuro would let me try mestinon trial? I desperately want to see if it helps the ptosis if not I can explore the surgery option but I really don’t want to cut into my eyelid unless I can rule out OMG for sure.

Thanks so much for reading this super long advise. Your advice would be much appreciated. It feels like these next few weeks will drag whilst I wait for answers. I hope everyone out there who is struggling with MG or getting a diagnosis is doing ok and that you all feel better soon.