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.

I just wanted to say hello. I am sorry you are going through all the uncertainty that comes with a hard dX. I can tell you one thing that will help with your neurologist. Bring a journal with you of all you have experienced. Also if you have someone with you in the room, the doctor has a tendency, to listen a bit better, and pay attention. If he responds, and you miss something, the other person can help you. I did this with all my appointments, and found that the doctors I saw, took more time with me, and listened much better. I hope that you can find answers to all the questions you have. Please let me know how you do. ginnie

I can't answer many of your questions because I was dx'd with general MG before any eye symptoms were evident to me. But I will say that your descriptions of the leg and arm weakness are EXACTLY what I experience. And the fact that it can be intermittent - - that's MG.

There are a few folks here who have both MG and thyroid dx's. I'm sure they will be able to help you more than I. Perhaps your father can check around to see if he can find a neuro who currently treats patients with MG. They are the ones who really get it.

Don't give up - - it can take an irritating long time to get a dx.

Hang in there, go with your instincts. Depending on where you live and the doctors available this could take some time. Be patient!
Mike

We have very similar symptoms. Like you, mine started out as Ocular MG and has generalized to arm and leg weakness. When I am tired I develop ptosis around my right eye brow and my right eye crosses inward (esotropia) which causes double vision (diplopia).

I started taking Pyridostigmine Bromide (Mestinon) in February and it has been a LIFE SAVER :-)

I keep reading on forums that Mestinon doesn't work for diplopia or a crossed eye, but it has for me! It has also really helped with my arm and ankle weakness. I take 60mg 3 x day. Unfortunately, one pill only lasts about 3-4 hours, ugh.

Sometimes, I wonder if I *really* have MG; but the fact that Mestinon works so well is a pretty convincing indicator that I do.

One idea would be to ask your neurologist for a one month supply of Pyridostigmine Bromide (Mestinon). You will know if it is working by just looking in the mirror :-) lol

Please keep us updated :-)

Hi, eyejoin. Welcome to the forum!

I'll answer your questions first.

1. Yes, the SFEMG requires your participation in contracting muscles while the doctor attempts to find any "jitter" or blocking while you do that. It's not necessary to do that for a regular EMG or RNS.

2. Yes, do post a before and after. If you can take the photos in the exact same light, exposure, and background, with the same head tilt, that will really help.

3. The only diseases that cause fatigable ptosis are MG, LEMS, and the Congenital Myasthenic Syndromes. Fixed ptosis has other causes.

4. If you're having that many generalized issues with strength, AND you have MG, no way is it only ocular MG! In fact, they have done SFEMGs on the limbs of people who allegedly only have ocular MG and have found positive test results, even if there is no obvious clinical correlation.

5. MG will persist in drooping your eyelids, even with surgery. There are many muscles in the fact and you can't lift them all without looking like your face is frozen!

This has to be a separate topic: How to deal with neurologists?

They can be quite arrogant. If you don't have an MG expert helping you, the neurologist might have only read that two page spread in most medical textbooks on MG. And they might only have had a handful of MG patients. Doctors, in general, don't like to look or feel stupid. Who does? I personally think that neuros should be resolved to feel stupid, because the human body can always surprise a doctor and there's no way they could ever know everything!

Do you have an MG expert? If you said what area you live in, someone might be able to point you in the direction of a good neuro.

It helps if you bring someone with you to an appt. They can back up your "story" to the doctor. Or take notes for you. Or advocate for you, if you're worn out.

Being calm and matter-of-fact with doctors helps. You know, not overly assertive but not a wimp either. You seem very methodical, the way you wrote your post, so that's good.

Beyond that, you really need an expert.

Ptosis from contacts? Oh, brother, what nonsense. Do contacts cause your legs to feel like lead weights, too? Talk about illogical.

Did you see a neuro-ophthalmologist? They are the ones who can specifically say if your ptosis is fatigable. They do very specific tests to do so.

You say you have blurry vision, and not double. You might not realize that you do! Take your pointer finger and hold it in front of your eyes about a foot away. Then, keeping your head still and only moving your eyes, move your finger from side to side. Do you see double at any point in the field of vision? If you do, does it go away when you close one eye?

MG ptosis is caused binocular, and when you close one eye, it goes away. Why? Because the muscles of each eye do not get weak "equally" and, therefore, focus differently on objects, causing the DV!

Can you list what the results of the antibody tests were? Both the results and the ranges?

Don't kid yourself into thinking that if you have MG and are ethnically half Chinese that MG will stay mild!!! It doesn't sound like you have mild symptoms at all. MG is highly unpredictable, and can vary from hour to hour and day to day.

Are you short of breath? If you are, that's one more bit of "proof" you can document. See a pulmonologist who can do full PFT's on you. That would include MEP (maximum expiratory pressure) and MIP (maximum inspiratory pressure). Basically, the tests are specific to neuromuscular diseases and shows how you are doing at breathing air in and out.

You should know that heat can make MG dramatically worse. Stress, lack of sleep, infections, surgery (like that eye surgery), etc. can make it worse, too. Certain drugs can, too. The eye drops optometrists use contain Atropine, which does the opposite of Mestinon, one of the drugs used to make MG better.

If you ever can't move well, can't breathe well, or can't swallow, that is a 911 type of MG emergency. MG can go downhill rather quickly and you need to be in an ER at that point. Don't be stubborn and drive yourself in.

Do you know if they ran both the Acetylcholine and MuSK antibodies? If you aren't positive on them, that does NOT mean you don't have MG.

A lot of MGers have thyroid problems, too. I have MG and celiac disease. I hope your doctors will realize that you can have more than one thing going on and not attribute all of your symptoms to one disease!

Let us know what else you need, okay? To me, it sounds like you have fatigable (instead of static) weakness. No matter what the cause, it needs to be defined and treated!!

I hope you get the test results soon. In the meantime, take things a little easier so that you don't get worse.

Annie

I am so glad someone actually answered her questions. :-)
--- I was just way too tired last night :-p

Thanks everyone for all your responses and warm welcomes And thanks for answering all my questions Annie.

I don't have much too report. I received a copy of the findings of my first consultation letter from my neurologist. He was very detailed in writing up all the history I gave to him.

He's a myasthenia expert based in at one of the big hospitals at South London so I guess I'm seeing the right guy. He's very poker faced when you talk to him so it's hard to gauge his response. He's overall finding and recommendations were

"Clinically it is not definite that she has myasthenia, but the symptoms might be suggestive and some additional symptoms might suggest thyroid disorder which could be immune. For this reason I am arranging to recheck the acetylcholine receptor antibodies, thyroid function and autoantibody screen. She will also have neurophysiology study to include repetitive stimulation and single fibre EMG"

Unfortunately I no longer have the results of my initial antibodies test from a few years ago. I accidently threw the piece of paper out whilst cleaning up.

I don't even remember how the results were presented but I remember being able to understand that it hadn't come back as a negative.

I also have a referral letter from another doctor where they wrote that the results were borderline / weak positive. So that's all the information I'm working with.

I'm living in London by myself all my family are back in Australia which is why I'm finding the medical system a bit harder to navigate as I'm quite unfamilar with it.

I can't post a picture of my ptosis before and after ice due to being a junior member.
Is it possible i can PM it to someone that can post it for me? I've also recently read that it's possible to have ptosis from being hypothyroid. I don't know if anyone has any experience of it? But I guess it may me possible in my case.

Do you also all find that alcohol seems to make your ptosis get worse really quickly? One beer or wine seems to make a huge impact on my eyes.

It's kind of strange that the Dr doing the SFEMG couldn't seem to tell whether I was moving the muscle or not. I would have thought it was a sensitive test that they'll be able to pick up on the fact that you weren't contracting a muscle as directed. Weird.

I'll keep you updated. I don't see the neurologist again until the end of the month.

How everyone is keeping well

you wrote: "Do you also all find that alcohol seems to make your ptosis get worse really quickly? One beer or wine seems to make a huge impact on my eyes."

my answer: YES!

Hypothyroidism can definitely cause ptosis. I had it for years and until my other symptoms got out of the realm of hypothyroidism, I blamed them all on that.